Mindfulness and Multiple Sclerosis

Two of my newest Doctors I added to my team are from US Davis Pain Management.

Low Dose Naltrexone   LDN was mentioned to look into.  I am still pursuing this, and have looked at some interesting data. would love to know about others using this with ms.

  Let me  hear of people's experience with this ldn, and the  home compounding sounds much more affordable, as then you could zoom into the proper doseage, instead of using a compounding pharmacy, for those inclined to make items.

I was in a Trial using real Biotin in large diseases (vitamin b7)  I found myself measuring precise amounts of a pure white pure Biotin powder daily, with a precision scale. I had to stop trial early due to thick blood from H63D genes they found by endocrinologist, as biotin was used in one of the test on thyroid glands. I was referred to the cancer center.

The Cancer Dr found the HFE gene, two H63d genes mutated, causing Iron overload. I have for 17 phlebotomy done.
https://rarepatientvoice.com/everchangingms/ is a good starting point for Rare diseases, or any. They do paid studies for research.

I make my own Quinine, to obtain 22 mg per serving, to help muscle spasms.  So this process of compounding Naltrexone 50 mg into 50 mgl of water sounds quite simple.

I am currently on about twenty five medicines.  A Sharp pain in My back and zapping thru My fingers brought me to these new Drs, from My GP.  I was inbetween Botox injections into My neck muscles and calf muscles in both legs. They had not happened for six months.

The Head Professor, at UC Davis  who injects the Botox was still a month away. My last Neurologist took a medical leave of absence, so It had been six months to get into the expert, and this Dr was the expert.

 The New Dr, had a student with him. A guided computer to help show how deep and into the muscles, the botox needle needed to go.  The needle  which was about three inches long  was effortlessly injected, as the muscle names flew softly from the professor, as I heard the machines crackling sounds diminish as injections were happening, some deep, some shallow. Some requiring more botox, as the needles he had were pre loaded with Botox. My calves and both sides of my neck were done.

I do miss My old Neurologist, and his small staff.   He had a lot of knowledge, and our discussions were always worthwhile, with my notebook full of questions. His scrybles, deciphered only by a few, shows My eight years of history with him. Some notes transcribed.  I do hope to see him lecturing somewhere on the circuit to ask him questions. He was a old timer, without the need for a computer, with a office full of papers, and a staff of two. One gal made appointment the old way in a book with pencil she had folder of Drs notes, and prescriptions written out.

 My online pharmacy, did not like their fax. Refused, and would leave messages for Dr at 2am. I finally found a way around this, as this was creating too much work to keep refaxing, and time talking to them.  On my part was a good hour every refill, for days on end. Drs office, was even more frustrated.  The Fax Machine, huge size for medical office, did not talk to the upgraded Hal 2001 , which was now standard for insurance companies. This generated computer errors, and call backs, but no human could fix, or know that was the problem, or relay such.

My fix, was to mail in the Drs prescriptions. That old fashion step got me My meds prescribed.


Now into new Drs...  The Botox helps tremedously. I look forward to it, kind of a oxymoron, but that's how some of the pain gets relief from.

                                               Guided computer for Botox

My other Dr is into mindful meditation.

I hope to keep adding to this page with your help of links, youtube, and others to try.

He has a MBCT  class in August, but it's now going to be virtual, due to covid-19.  Matthew is trying to get me in, but for now, here are some links I have found.


LDN
https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

How to be your own compounding pharmacy directions
https://altarp.com/how-to-prepare-low-dose-naltrexone-ldn/

Search Facebook for LDN

Other groups
Facebook private group on interested Clementine Fumarate
Clemastine Fumarate / Metformin / Off Label Drugs For Multiple Sclerosis
https://www.facebook.com/groups/699183567291955/

MINDFULL MEDITATION

I was first introduced to this from Lindsay Wagner, https://lindsaywagner.com/
 who played the Bionic Woman.  My Partner, Wil, is a big fan of hers, and Wil  has a few of her look alike dolls in his collection from the Bionic Woman.

We went down to Monterey, CA. For a seminar on mindful meditation. It was held in Monterey. Wil found a unbelievable deal and instantly booked a great  deal for a weekend at  the
 ASILOMAR CONFERENCE GROUNDS. https://www.visitasilomar.com/  We had a building to ourselves, and the ocean right there. Work didn't matter, as we put in for the days off regardless. We made our own food, so not to disturb conference they had.

This is when I was being  mid diagnosed with Crips. Chronic Regional Pain Syndrome

Lindsay was in Monterey, just minutes away from Asilomar.   A quite quaint Expensive Town, that you will feel out of place in without name brand expensive apparel on.

We sat front row, perhaps the only two guys, but standing room only before she came out in a flowing soft cotton outfit.

The year was 2011
We bought her CD ,
Lindsay Wagner on "Quiet the Mind and Open the Heart."

lindsaywagner.com

https://m.youtube.com/watch?v=1yX8ePlf-Pk


https://www.pinterest.com/pin/533676624567062205/https://www.pinterest.com/pin/533676624567062205/


https://www.elevatedexistence.com/the-bionic-woman-lindsay-wagner-talks-meditation-holistic-healing-and-shifting-perspective/


Other mindfulness sites of interest
https://healthstoriesproject.com/5-self-care-tips-for-chronic-illness/

https://palousemindfulness.com/MBSR/week0.html

The MS Trust has a few to start with.
https://www.mstrust.org.uk/a-z/mindfulness


I have been invited to join a study group put on by the University of Washington on MBCT, or CBT training, or by the flip of a coin, just a care group for eight weeks.
This is funded thru the National Multiple Sclerosis Society.

https://www.nationalmssociety.org/About-the-Society/News/MS-Trial-Alert-Investigators-Recruiting-People-wit

https://multiplesclerosisnewstoday.com/2019/01/31/ms-patients-sought-test-alternative-chronic-pain-treatment-methods/

I asked them specific questions my new Drs had, of continued appointments with them, and joining their group in August, overlapping the study.  The Dr I spoke to in Washington, did not see it as a problem doing the MBCT training at UC Davis also. The parameters.

This will all be by zoom platform, University of Washington platform, phone and email, with 6-7 per group. A Total of 240 participants, with 80 for MBCT training, 80 CBT training and 80 in care group...no help.  So hope to have coin flip for MCBT.  July 29-Sept 16, with follow ups.. Meeting two hours weekly.

Eyes, Optic Neuritis,

My actual eye

A visual of my Eye.  I have a great team of Drs put together for Multiple Sclerosis. These include a ophthalmologist, with state of the art equipment.   A Optometrist who looks at my nerves, diseases, eyes of course, muscles that control the eye are looked at by both.  A Team at UC Davis specialist, and GP help in all other areas to keep The Quality of life.

 The optometrist can write a script for new glasses, while the ophthalmologist is more eye surgery, cataract,  and comes up from his city office on a Saturday to check on people in My remote community.

My optometrist is still a long drive away to get to, but spends extra time looking at my eyes, and double vision to try to correct with prisms in glasses.  I wear two pair, one for reading and writing this blog, the other for distance, or what is my new distance.

I can change eye glasses a few times a week, on how prescription changes. This is due to Multiple Sclerosis, and how it effects the nerves of the eye, and muscles that accurately positions the eye for precision items. Also is involved is the nerves, and how they relay the message the send to the brain, to be interpreted.

In 2017 optic neuritis, a popular event that can pre-precede  multiple sclerosis, was my buddy for a while.   Cotton balls on end of nerves. Some missing spots I knew was missing from my vision field, some pain, but I am on so many medicines, I probably do not feel the pain as much.  

This year, a eye lash stuck in My eye, and for how long? Did not feel it, or the time spent to have it removed.  Knew My vision changed, and My eyes would fire easily. 

My notes, looking back, can provide a helpful use of valuable information, as I kept.  In December 2017, I was prescribed oral steroids from my GP, for symptoms he saw, trying to help me relieve symptoms.Joe

I saw my optometrist that month also.  Cotton Balls seen at the end of my Eye nerves.  I sent the report to my neurologist, and she quickly put in a order for IV Steroids.

Middle of the month, My Neurologist, prescribed five days of IV Methapredisone, or known as soul medrol.  The local bandage hospital up here, had a huge problem with this simple task, stretching it out to seven days. A hour procedure taking four hours. 

Then came a MRI.  the Spinal Doctor, found two herniated discs that were found impeding on the nerves. It was producing a stabbing in my right shoulder blade (a prior Dr, who I do not see,  told me it was a torn rotator cuff, and was going to do nothing, except stand on other side of room).   

I was sent to a specialized Surgeon, and injected 80 mg prednisone into neck cavity day after Christmas, to relieve pain.   This did nothing.

Botox injections had only lasted me 52 days this time around, and I was due for another round.  The Neurologist saw the muscles in spasms in the neck. Injecting deep into the muscles and other muscle groups gave me relief I felt, without the back jab, or electrical waves going thru my fingers.

I was glad No optic Neuritus going on for 2020 at this time.  

 I have The two Genes for Age-related macular degeneration (AMD). It is the most common cause of irreversible vision loss among older adults. The disease results in damage to the central part of the retina (the macula), impairing vision needed for reading, driving, or even recognizing faces. This test includes the two most common variants associated with an increased risk of developing the condition.  No sign of this going on.   

Some cataracts growing, means no more IV Steroids, as they do more damage than good.  I will have to ask for Acthar next time.

https://www.actharmsattack.com/

 The optometrist spent time with me, sending me my Eye pictures, and Retna Thickness. Something perhaps by age, or perhaps related to Multiple Sclerosis. Neurologist was studying this aspect of thickness. Perhaps only me being studied?

Wonder if a Study of the thickness of the Retina has ever been done in respect to Multiple Sclerosis, as a point of interest.   The New technology allows for learning a lot of eye information.

I would love to hear about your eye exams

Stay safe 

Joey

MS and Research logs

Some on line know me for research or blogs I have allowed scientist to pursue, On certain questions about MS that may be helpful. Others lead to more questions.  Above is a relative known as "White Peter" Google is a great starting point.

I am part of AllOFUS.ORG. AllOFUS.ORG, a research program , I may never see results in my lifetime, but was one of the first joining.

Patientslikeme.com  Patientslikeme.com was another research program, but they sold out all my information to United Health Group. So not sure where they are going now. They have a lot of history, snapshots of DNA over time, lab charts, and more. They are good at tracking every symptom, medicines, labs, and many conditions.

 I ConqureMS.com  iconqureMS.com is yet another company for research I answer questions for. They combine a lot of information, and you can upload your labs, so science can see.

 UBiome.com, has a lot of information about my gut issues. I was a test patient for them, sending in stool samples, getting reports back to share.  Their platform sent me to selfhacked.com, to understand information.  In 2019, they were busted by FEDS for insurance fraud billing. Got greedy. No more reports.

Last year at christmas, 2019, I did a VIOME.COM. VIOME.COM test of my gut bacteria.

 I also did a TELLMGEN.COM  DNA

TELLMGEN.COM test of my entire DNA, and to see how my prescription medications interact, Diseases it may pick up, and Research for them to do for quite sometime.


The TellmeGen goes into PHARMACOLOGICAL ACTION of different medicines that you use.  They have  your individual make up of DNA.  So the results will be different for everyone.

There is a lot of good reading, about interaction, RESEARCH STATUS, PHARMACOLOGICAL ACTION of many medicines on the market.  I gave them the specific list of twenty five medicines, so they could have their scientist see how I may metabolize them, and perhaps help future generations.  This I am sure will take time to analyze.  They have been great with email updates on questions I have asked.

I had a call the other week, from
BioMedical Insights, a health care consulting firm, and they were researching hereditary hemochromatosis on behalf of a client interested in treatment development.  They received their information from
Rare Patients Voice
  https://rarepatientvoice.com/EverchangingMS/
https://rarepatientvoice.com/EverchangingMS/

A recent study provided them with my contact info.  It provided a useful hour of talking about a new treatment. Think that's great!
It was a fun filled hour on a conference call, explaining My Rare H63d Genes that caused hereditary hemochromatosis, and a new drug treatment that could help thousands and thousands of people. Not a cure, but sounds promising for all.

Rare Patient Voice, LLC provides patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services. they will also send you a $5.00 gift certificate for joining, and a stipend for interviews qualified for.  I have seven conditions listed with them.  More information to come.

My GP, was kind enough for my request to learn about pharmegentics, as such a new field, FDA may not look into it for years. This I will talk about in another blog.

First I will talk about my most recent GUT test done by Viome.com

The Sample for my Gut was sent in December 26, 2019.  that generated a report of My Active Microbes.
Their are a lot listed, which I will have a dietician at UC Davis look at.  They also helped me with a food map, that my GI, wanted me on. This listed foods to Avoid, Super Foods, and foods to take in moderation with my Gut Condition that a microbe was taken of.

There were
SCORES TO FOCUS ON

Inflammatory Activity
Intestinal Barrier Health
Butyrate Production Pathways
LPS Biosynthesis Pathways
Putrescine Production Pathwaya
Oxalate Metabolism Pathways

SCORES THAT ARE GOOD
SCORES WITHIN RANGE

First was No Butyrates, or Probiotics were found.  That was a area that I could address with my GI Dr.   I am on linzess, lactulose, and metoclopramide to keep things flowing of constipation and Diarrhea. Perhaps the Gut Lining is needing a Boost.

"This score assesses the levels of activity of all microbial pathways that lead to the production of a beneficial nutrient - butyrate. Butyrate is a short-chain fatty acid known to beneficially affect many wellness areas from gut lining to insulin sensitivity and satiety (feeling full). A score that needs improvement means that your microbial butyrate production could really use a good boost! Individuals with low butyrate production activity would benefit from supplements or foods that either feed or add butyrate producing microbes into your gut ecosystem. "

This led me to What is leaky gut?

Leaky gut is a popular term used for increased intestinal permeability. This phenomenon occurs when the tight junctions of the intestinal walls become loose, which can allow harmful substances to enter the bloodstream. This means bacteria and toxins are able to “leak” through the intestinal wall more than normally expected.

I bought some Iberghast,  and a bottle of Vital nutrents  that contains: pancreatic 500mg and ox bile200mg ..protease 111k usp, amylase, 122k usp, lipade 17k usp

45 days later Viome gave me more recommendations.  I went over these with my GI dr. He said to try one at a time.
These consist of Berberine, mixed Polyphenols, Glutathione, Zinc Carnosine, probiotics strain Lactobacillus KE99,  probiotics strain L. reuteri DSM 17938, L. reuteri ATCC PTA 6475,  digestive support of Peppermint leaf extract, horse chestnut extract, quebracho extract, perilla extract, another probiotics strain Lactobacillus plantarum.

With my Multiple Sclerosis paying a huge part in my Gut, or perhaps the other way around, that the Gut is responsible for some of the Multiple Sclerosis.

I have not tried everything yet, some of it is cost related.

Zinc-carnosine is a unique product that appears to enhance the stomach's mucosal defenses, providing significant improvements in gastric ulcer patients. It also supports small intestinal mucosal integrity and inhibits the inflammatory responses in H. pylori.  I have been on regular zinc to keep colds away, without over reacting my immune system. Important for people with MS


Does L-glutamine work for IBS?  https://www.medicalnewstoday.com/articles/320850
https://www.medicalnewstoday.com/articles/320850

Berberine – A Powerful Supplement With Many Benefits
Berberine link to healthline.com. This one may help combat my high triglycerides, along with Vascepa I tak

https://www.healthline.com/nutrition/berberine-powerful-supplement#section4



Bile Acid Supplements May Ease Symptoms of Progressive MS

https://multiplesclerosisnewstoday.com/news-posts/2020/03/31/bile-acid-supplements-may-ease-inflammation-symptoms-progressive-ms

https://multiplesclerosisnewstoday.com/news-posts/2020/03/31/bile-acid-supplements-may-ease-inflammation-symptoms-progressive-ms

(MS) patients have lower than usual levels of molecules called bile acids circulating in their blood, a  study found. These molecules, produced in the liver to aid fat absorption in the gut, also appear to block inflammation and nerve cell damage in the brain.

Another step was looking  to the bile salts.

Product Information Butyraid 100 Tabs - Featuring butyric acid from the salts of calcium and magnesium, Nutricology ButyrAid is in an enterically-coated tablet designed to release in the small intestine. This short chain fatty acid is produced by certain probiotic bacteria and appears to support intestinal integrity

And as my GI told me, everything may be just going thru me daily. Something I need, so not to be costipated, but to have bowel movements without major straining. I do not understand alternating constipation and Diarrhea during bowel movement, and followed by three, then good for the day.  But better than having accidents, as I was before. Part of MS. Or the H63d Gene not allowing iron back into my system a year and a half later.

Had anybody tried any of the above?
Thank you for reading
JoeY

Testosterone and Multiple Sclerosis

Testosterone and Multiple Sclerosis researchers needed

This page intended for researchers, Nord,  scientist, neurologist, cancer Doctors, endocrinologist, and Gps and students to see if double dosing a MS patient with Testosterone Cypionate  200 mg/ml has any effect on muscles, or, stopping MS progression in multiple Sclerosis.

https://www.ncbi.nlm.nih.gov/snp/rs1799945#clinical_significance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686335/


Testosterone Affects Outcomes in Men With MS | Multiple Sclerosis


strange-warning-signs-low-testosterone/

Hypogonadism and the risk of rheumatic autoimmune disease.

https://www.ncbi.nlm.nih.gov/pubmed/27325124
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5544431/
https://arthritis-research.biomedcentral.com/articles/10.1186/ar328

Immune Modulation And Increased Neurotrophic Factor Production In Multiple Sclerosis Patients Treated With Testosterone


The role of testosterone in MS risk and course


The following charts were compiled over eight years bringing us up to date
  Note the Testosterone  low numbers would represent the lowest I would drop between injections.
This Study started 2012 to present. The testosterone was  stopped for a  MRI of Pitulary Gland.

The Cancer Dr found two copies of the H63d Gene mutation causing Iron overload.  This is listed in NORD, as a rare gene.  17 phlebotomy took place over three months. Hemaglobin, transferrin, and other labs available by email request.

These are lab reports from total testosterone.
Testing procedure changed  April 06,2020 .

was changed to do testosterone after 4th day of injection.  All others were tested with one week off inbetween injections to see the curve of the lowest point going, Weekly or every other week, as shown in notes, as started every other week, Changed to weekly, as lowest curve was to low for drs.

Note Achtar, used for MS, raised testosterone, as a hormone.
3/07/16 Testosterone went to weekly shots. Everything before this was every Other week.
Other items listed are reference points of other test done and diagnosis reference points. Dr names have been removed for privacy.


Apr 6, 2020 7:16 AM
1,008 ng/dL
Mar 16, 2020 7:30 AM
127 ng/dL
Sep 23, 2019 7:58 AM
396 ng/dL
Apr 22, 2019 7:55 AM
528 ng/dL
Mar 4, 2019 7:30 AM
374 ng/dL
Dec 3, 2018 8:08 AM
457 ng/dL
Oct 22, 2018 7:55 AM
676 ng/dL
Jun 12, 2018 7:00 AM
71 ng/dL
Jan 25, 2018
76 ng/dL
Sep 17, 2017 7:00 AM
246 ng/dL
Sep 12, 2017 7:00 AM
246 ng/dL
Jun 22, 2017 7:00 AM
222 ng/dL
Apr 3, 2017 7:00 AM
1,686 ng/dL
Mar 30, 2017
1,636 ng/dL
Oct 3, 2016
265 ng/dL
Feb 18, 2016
175 ng/dL
Feb 12, 2015
12 ng/dL
Dec 16, 2014
143 ng/dL
Dec 3, 2014
143 ng/dL
Sep 8, 2014
1,053 ng/dL
Sep 5, 2014
240 ng/dL
Aug 11, 2014
1,014 ng/dL
Aug 7, 2014
1,163 ng/dL
Jun 3, 2014
1,052 ng/dL
Mar 3, 2014
405 ng/dL
Dec 11, 2013
91 ng/dL
Sep 5, 2013
240 ng/dL
Aug 30, 2013
240 ng/dL
Jun 12, 2012 2:05 PM
177 ng/dL

About Total Testosterone (blood)
Total Testosterone is an androgen hormone. A blood test is done in males and females to evaluate sexual dysfunction, fertility problems, premature or delayed puberty, virilization in women and as a marker for polycystic ovary syndrome (PCOS). Levels will vary by age. This data is self-reported by patients on the basis of laboratory testing.
---------



Alergic tramidol, carisoprodol
Cymbalta works. Duloxetine Actavis, bad reaction 50%, Teva brand 60%. Do not give either sub brands.  Lupen working 11/17, Changed formula, not working..

Allergic to fenofibrate. Increased creatine 2019-2020

wrong diagnostic Complex regional pain syndrome RSD

Mir neck dec 27 2011
lesep and arm test March 29 2012
Mir lumbar spine may 17 2012
blood test June 5 2012
eye dr June 27 2012 alt  exotropia
blood tests July 2 2012
Mir brain July 18 2012
spinal tap Aug 1 2012
ms treatment botox September 13 2012
cervical degeneration disc disease &
Multiple Sclerosis  diagnosed by neurologists Dr
eye ophthalmologist Oct 20 2012
Copaxone start November 10 2012
botox Dec 13 2012
Ver Lesep test Dec 19 2012 failed
Mj switching to generic cymbalta 2/13/15 clinic saving money******
b12 injection Feb 22, 2013, nuvigil. Had to have b12 before test
botox March 14 2013
Dr. New heart Dr  heart may 30 2013 refered by dr
Dr 6/6/13 notes Optic Disk Pallor and Right lateral gaze nystagmus
6/28/13 Mitral valve prolapse dr
8/12/13 botox
9/13  1 ml /week
10/01/13 medicare + medicaid
10/04/13 flu virus vaccine
10/02/13 TCL and EEG done
10/17/13 botox, EKG, Nuvigil10/19/13
11/05/13 testosterone level check quest
11/26/13 Shingles Vaccine
12/11/13 labs, tsh. testosterone=91.5 ,
1 mg inject
12/2 12/25 0.5 injections
12/26/13 Botox neck calves
1/8/14  injections  .75 results= 91.5
2/4/14 testosterone injection to 1.0 ask next month for labs
 Testicular Hypofunctionon going on
Feb-04-2014  Umbilical HerniaFeb-04-2014 -Pharyngitis, Acute

2-19-14 start 40 mg copaxone NEW
2-20-14 Dr.  umbilical Hernia San Andreas. Blood work EKG done,
Tetnas Shot
3-03-14 quest testosterone tests
3-11-14 hernia repair Mark Twain Hsptl
3-13-14 Botox, r neck, l calf, eyes above
3-13-14 Lower Extremeties
3-18-14 re-Start 20 mg Copaxone
3-25-14 Swallowing Study Sutter Amador Hospital
12/15/14 testosterone to 1 1ml  every 2weeks
Esophageal Motility Disorder Dr
04-1-14  Depo-Medrol 80 mg & pill  Dr
METHYLPREDNISOLON
04-19-14 Dr  opthamology
5-01-14 prostate check,&lab
. thickners added to drinks.
5-21-14 botox neck, head, outside right leg
6-03-14 blood test quest ALL
6-04-14 ACTHAR 5 day injection  *Raised Testosterone
6-12-14 Lower Extremities
8-04-14 Botox  neck, both calfs
8-06 14. blood: acth,testosterone, tsh &t4, hemoglobin a1c, cmp, cbc, lipid, estrogen.    =1,163 ng/dL
9-08-14 blood. testosterone, cbc,psa.  =1,053 ng/dL
10-13-14 botox both calfs inside/out
10/15/14 Testosterone change 1/2 ml  per Dr @1153
10-24-14 flu shot
12/03/14  lab testosterone.                         =143 ng/dl



12/23/14 Botox neck, both calfs
 12-25-14  right chest arm muscle spasms 15 days . Dr informed
1/5/16 sent saliva sample for DNA testing
1/16/15. Costochondritis  per Dr  said torn rotator cuff.
3/9/15.  botox neck right, right outside calfs, left inside calf.             EMG done  scan lower extremity
3/20/15 All Labs done
5/14/15 testosterone inject 1.5ml dose new. Level = 120  ng/dl
5/26/15 Botox both calfs, neck
6/23/15  testosterone test.   Testosterone = 411
7/11/15., ucdavis tests
7/13/15
 labs for UCdavis viti!ine D, B, CBC, varicella sister, heptic  function, basic metabolic,
7/24/15 Dr SAC heart EKG, Echo Gram  high pulse
8/10/15  vit D=14 (30-100)  wants increased to50,000 iu/week
8/11/15 Botox Dr  left, right calf's, neck
8/11/15 vit D=13 (30-100) b=262 (200-1100).    ADDED 5,000iu vitamin d3
8/14/15 thru 8/21/15 wore heart monitor cardiac event recorder Dr , Sacramento Heart OK avg pulse 80
9/09/15 start 1000 B12
9/14/15 Quest vitamin D check ucdavis
             Vit D =38 (30-100)
9/15/15 SEP test Dr
9/28/15 labs vit B, D, CMP

             Vit D= 50. (18-72) Vit b12=396 (200-1100)

9/28/15 ADDED 5,000 vitamin B daily
10/12/15 Flu shot
11/12/15. Botox Deep neck right, both sides neck left calf inside, right calf back. ADDED 7,000 vit d.
11/16 Dr. Still doesn't want to do anything. Said rotator cuff may be torn last month.  Doesnt want to do anything. Should of prescribed valuim three months ago.Valium was prescribed for muscle spasms
12/17/15 Ampyra started
Dr  wants cmp,cbd, vit b, D, testosterone read feb
1/4/16 Dr refused blood test, didn't want liability. Told him to contact specialist.
1/4/16 Osteoarthritis in left elbow nodules Dr nothing done.
 1/4/16   Tmj in left jaw mills did nothing
2/11/16 botox
Dr  injects right Left neck, left calf botox.
Emg of heart
2/12/16 labs per two drs
CMP, testosterone total, urinalysis complete,CBC inc diff pot, bit b13, folate, serum panel, PSA, total, Lipid Panel, Vitamin D, 1,25 dihydroxy lc/ms/ms,  Tsh and free T4
2/18/16 new GP Dr. Sample of 75 mg viberza given for diahrea. Got blood test
2/18/16 .     vit d=52. Vit B= 1409
 testosterone= 175
3/01/16 blood flow of brain Dr. Added nuedexta sample for quinine.
3/17/16  referral to GI. Dr  May17  Viberzi 100 mg given 2xday.
Increased testosterone 1ml every week. 3/26 4 bottles
4/08/16 ucdavis did chest xray Sacramento  findings: Dextroscoliosis dextroscoliosis of the
thoracic spine is noted.

  Increased vitamin d 50,000 twice per week, use b2, 6,  biotin try all Bs
4/11 switched to Walmart pharmacy all drugs.
5/02/16 Dexta scan  sutter amador -.7 is low enough.
5/02/16 pth level blood sutter amador, cough sample.
5/23 labs per UC Davis long chain fatty acid test UC Davis Dr ,, vitamin D cmp, vit b standing order
5/25 start RISEDRONATE soDIUM 35MG TABLET for bone loss
5/26/16 upper and lower colonospopy Dr
 Sacramento.  Upper flap ulcer, report Sutter health.
COLONOSCOPY W / OR W /O INTERVENTION performed by DR
ESOPHAGOGASTRO DUODENOSCOPY (EGD) performed by DR
When:
Thursday May 26, 2016 9:00 AM
Ulcerative Colitis and hiatial hernia
5/27 Friday. Copaxone delivery, knots in calfts, right leg hurts,, shoukder
6-01 Dsl#3 450  billion probiotic start 6/01. $88 cosco paid
6-3-16. Prednisone 20 mg start 6/3/16 three times day for three days. Sauer
NEW  RANITIDINE HCL 150 mg for irritated stomach found.
150MG TABLET Dr
6/27/16 applied to NORD for DSL#3 DS
7/11/16 steroid injected by Dr right shoulder neck. Relief!!
synthetic glucocorticoid corticosteroid  Triamcinolone 10mg
 Lasted four days
7/21 thyroid checked. Calcium blood test. Endocrinology ucdavis. Increased vit d to 150, 000 for three months, then blood/ urine test. Dr  ucdavis
8/08 antibiotic Dr  for green slime coughing up levofloaxacin
8/11/16 botox to upper right shoulder neck, both calves Dr
8/20/16 three day round prednisone oral, once antibiotic was done.
9/07 botox booster outside left leg. Dr
9/10/16 flu shot given by pharmacist
9/28 lower extremities test, blood flow test
10/03 labs test Dr . Calcium. Vit d2, albumin,creation&calcium 24 hr urine. CBD Cmp by Dr
10/21 stopped B vitamins, not doing anything. Lowered D to 100,000/week D=91 ask gp on testosterone low  testosterone= 265 per Dr  uc davis
11/07/2016 Dr  increased testosterone to 1.5 ml/ week
11/09 applied to more for another year vsl#3 D's accepted

11/10 botox Both inside calf's, right neck muscle
11/12/16 100mg pure Biotin three times day. Scale to measure
MD001 trial
https://purebulk.com/biotin-pure/ Dr anducdavis, dt
11/22/16  uc Davis MRI cspine and brain Dr
1/11/17 flue with green all month
2/06/17 Dr evoflaxin500 for10 days, cough syrup
2/07/17 Dr . Botox both calf's and neck muscle twice for right shoulder. To add zinc to diet. This area on neck did trick
3/06 bactrim 10 days plugged me up. Dr
3/17/17 Dr  EKG, yearly visit
3/30/17 Dr to stop testosterone shots. Do a bunch of labs before seeing her in three months.
Increase to 150,000iu/week vitamin D level dropped from 91 to 63
Test: total testerone,sex hormone binding,hemocritin, PSA, luteinizing hormone, folic stimulating hormone, prolactin, thyroid stimulating hormone, thyroxine free,  misc lab00041   IGF-1,  cortisol, vit D, magnesium. Three monts
increased got D to 150,000iu week  also
Stop testosterone 3 months so labs of hypothalamus, pitulary, testes,
Stopped md1003 for testing
4/01/17 Dr yearly opthalmologist exam
4/03/17 Dr  lab test CBC, Comp metal,lipid panel w ratio t4 free, testosterone, tsh fasting test
4/05/17 increase vsl#3ds 1 package per day dr 950 billion
4/07/17 cyst drained left wrist Dr
4/08/17 Dr levoflaxin500 for10 days, for green phlem cough
4/10 Dr neurologist UC davis, about samr
4/26 sent Dr MRI disc to compare
5/04/17 UBIOME gut bacteria sample, registered to mail
5/08 Botox Dr neck both sides, middle, both inside calf's. Can see muscles hard.
6/1/17 patients like me pioneer in research consent blood draws
6/07/17 Dr booster botox x left calf.
6/ /17
 Am doing ESR,CPK,vite,HHV-6 virus,testosterone, sex hormone binding glob, hematocrit,PSA,luteinizing hormone,follicle stimulating hormone, prolactin, tsh,thyroxine free,igf-1,cortisol,vitimin D,Magnesium on upcoming labs, thus why off testosterone therapy. Hypothalamus -pitulary gland-testes loop and thyroid
6/19, 6/21, 6/22, labs for drs. Had problem with ana panel test, and cortisol. Not their responsibility. Did not know what checked box mention.
B7/03/17 Dr  doing MRI of pitulary gland   keep 150, 000 vit D level 83,
Testosterone restart after MRI.
7/04/17 Started back md1003 Biotin, added LENTLES to diet
7/07 Dr ALA α-Linolenic acid (ALA).  try http://www.medicalnewstoday.com/articles/318225.php
7/11/17 MRI of pitulary gland Dr UC davis. Pitulary fine
7/12/17 Hypogonadotropic hypogonadism
7/12 start 1 ml testosterone per week. Level below 211
7/24/17 blood draw for patients like me. Edta plasma, pax gene,serium red top, RNA DNA four tubes
Alpa lipoic Acid 600 mg twice daily. Start7/26/17
8/11/17 have rash woke up to on groin, buttocks, 8/12 moved to waste line, back and arms. Still moving around. Rash on buttocks, spread to groin, then hives moved around on arms and leg muscles thru 6 am 8/15
8/15/17 botox Dr both legs. Spasm found. Right rotator cuff, muscle high on neck. Refills in 3 weeks.
8/18 muscle spasms quite sore from botox.  Neck shoulder sore spasms
8/19 picked up Monday 8/21 Ingenious Modafinil. Generic change of name from cephalon modafinil provigil written.
9/12/17 fasting blood test ucdavis for Dr.  Dr  go over shoulder, gut pee test on Sunday.
10/05/17 more endocrinologist  blood test UC Davis. Note Biotin taken in am 100mg messes with tests. Took Sunday tested wed am
10/05 Dr uc Davis drop testosterone to 1/2 weekly. 140,000 iu vit D. Told her I took Biotin that morning, and was dehydrated last test, and biotin not stopped soon enough. Retested four test. Thyroid came up high because biotin. Hemacrit within levels..hydrated.
10/06 D did liver panel on me at Sutter hospital. Ok good result
NEED IRON, FERRETT ran 11/06 fine
10/09/17 added chicory root 1/2 tsp-1tsp
10/21/17 flu shot
10/27/17 EKG Dr . Increased clonidine from .2 to .3
11/06 labs  Dr.   Cbc, ferritin, , iron, liver.
 Ordered MRI of spine neck
11/08 MRI spine Sutter hospital
11/10 two page report on pinched nerves. Called, ucdavis let known
11/12/17 added corn pre biotic
11/15 Botox Dr Would not look at neck report
11/21/17 blood draw patients like me TAD
12/4 Dr Mad he did not see me souoner. Need referral Dr for epidural injections.
12/4/17 Dexamethason 4mg. Two tabs 4 days, the 1 tab 4 days to relief pain from disc pinching nerves 12/04/17 bowhay
12/07 called for referred again.
12/07 Dr  optic neuritis left eye. New glasses, 2 hrs spent

12/14/17 Dr  to go over botox
12/14/17 Dr went over MRI notes and eye notes. Sent e home with bottle of hyaluronic acid
12/26/2017
12/26 epidural  Placerville 80 mg prednisone into neck. Did not work he called 1/09/18
Dr epidural injections. 
El Dorado Surgery Center
Sutter Amador Dr  treating optic neuritis with 1,000 mg Methylprednisolone 12/14/17 5 days iv solution Dr , optic neuritis injected iv for Thur, Fri, Mon, Tue, wed
12/26 epidural Dr 80 mg prednisone into neck. Did not work he called 1/09/18
2018
1/3/18 Ubiome study of gut sent in #3
New GP from clinic. ----
1/09/18 Dr
Subject: Referal    referal to us davis for spine institute
1/25 blood fasting at ucdavis  cbc,cm p for dr 730
1/25 Dr MS clinic midtown 11am, not enough time. see her six months
2/01/18 Dr  was 150,000 iu D/week,level 86,  2 ml testosterone lweek level54
2/07 Dr  added Simethicone to daily for bloat
2/15 u c davis spine  Wants four fused. 5 minutes, no q&a
3/1/18 postponed surgery indefinitely four disc Dr  wanted fused .
Note 1/3/2020 not candidate for any surgery
3/2/18 Dr ekg. High triglycerides from pasta, bread, sweets, wine day before. Not worried. Him and Dr sidhu glad not doing surgery.
 5/15 added 400 mg hyaluronic acid pe  protruding
5/17/18 botox both calfs, upper right neck to right arm muscle
6/01 Psylium hull added
6/02 18 hyaluronic acid London is 300mg
6/6/18  hepatitis c antibody test .16 ratio who c ab non reactive
 Hemoglobin test  e at  111 diabetes non, less 5.5
6/07  hernniha large protruding.  hemorrhoid per Dr picture sent
6/12 lab test UC Davis, botox extra ink  left calf
          Joined all of us research
6/14 vi t D=72 take 140,000 iu week
Testosterone level #71, taking 2.0 ml week, dropped from #76 from last test.
pth was 12 in May 2016,
 blood calcium 10.4 on 6/2018--------------------------------------------
Lowered D in 1/2, testosterone to 1.5
6/22/18 end of test of 300 mg Hyaluronic from London and Hyaluronic acid 100 mg form Dr =400 total. START test of 450 mg Hyaluronic Acid and 600 of chronodition together
6/22 hemorrhoid inside also. Butt black left side. Used fluoinocide.
7/12 Dr referred me to hematology blood specialist. Primary Polycythemia.  Hypochondriac in male. Vitamin D deficiency. Put me back on 2 ml testosterone and 150,000 vi t D
8/8/18 Dr , UC Davis cancer  Polycythemia primary center blood test, curriculum econ 9 mutation,cbc with diff, cmp,erythropoietin, ferritin, iron, jak2 mutation, lab misc, transferrin.
8/15 /18 botox calves and neck DrTold he add baby asprin, upon telling him tests.primary
9/12/18 Dr uc davis cancer iron overload syndrome. Did cbc, hemochromatosis the gene dna blood. Ordering scan of abdomen. H63d both genes
9/14 new GI uc davis. Dr
Scan for Dr
9/17/18 Sleep study by Dr teams of paper. Joe and wil
Abdominal ultrasound is a type of imaging test. It is used to look at organs in the abdomen, including the liver, gallbladder, spleen, pancreas, and kidneys.
9/20 EKG by Dr . Went over echo and high triglyceride. Sent to Dr, before meds to lower.
9/24/18 hydrogen breath test uc davis Dr Negative for small intestine overgrowth positive for butane from constipation.
9/26/18 start Polyethylene glycol pkt 3350-rx  Dr
10/01/18 phlebotomy 300ml Taken labs before and after, but diluted with saline.
To do phlebotomy Weekly. Labs taken before
10/04 TRULANCE 3 mg started Dr
[]10/05/18 Fenofibrate 145 mg started Dr for triglycerides
10/7/1 fluarixq quad flu shot
10/7/18 tetnas diphtheria a cellular pertussis vaccine
[]10/08 phlebotomy uc davis 250 ml. Looked like soft serve ice cream. This being done weekly
10/10 labs, Dr  3pm. Iron overload is rare in patients homozygous for the H63D mutation
10/11/18 botox both calfs. Hard as rock. Neck muscles also Dr
12/03/18 labs Dr . Vitamin D stopped for last month went from 104 to 43. Calcium 10.0.
Still phlebotomy weekly.
12/06 Vitamin D at 70,000 it week, testosterone at 1.5 per Dr
12/14 metoclopramide added back in Dr. Th I is iron is overloaded and in pituitary gland, liver, as ferritin came down in level, but hemoglobin still high. Referral to liver dr.
metabolic disorder. Liver Dr did nothing.
Still phlebotomy weekly
1/2/19  last phlebotomy stops, as now anemic
2/26/19 changed from Trulance to linzes Dr
3/13 testosterone increased by.25 to 1.75 ml. Vit d from 70,000 to 140,000. 374t 47 d
3/18/19 lsep test Dr
4/19/19 Limon changed formula for duloxetine. Took it off 1 month. Not as strong. Lasting 18 hrs
5/06/19 botox both calls and neck
5/18/19 eye exam Dr
5/06/19 botox both calfs and neck
5/18/19 eye exam Dr
5/30 19 booster inside left leg botox. Ask about a new MRI in August
7/30 request increased duloxetine 30 grams more for pain.mood
8/06 botox Dr
8/29 booster shot two areas left leg sauer. Magnesium 400mg added
9/07 flu shot
9/23 added probiotics per GI Dr align and Phillips colon
10/01/19 added 180,000 vit D per , retest three months. Stopped fenofibrate
10/07 tests Dr
Blood test  per Dr c.f. To Dr
10/11 Dr   dyslipidemia, high triglycerides. Fenofibrate caused spike in creatine up to 1.84
Change to blood control med and vascepa
10/16/19 manometer uc Davis  dr. fleet enema before.
12/02/19 blood test and dr
12/10/19 added 65 mg Iron every other day, as still anemic from blood test
12/19/19 MRI brain and spine Dr
Tachycardia
12/26/2019 did Viome.com test of gut to help with food map, and recommendations, for stomach detailing since phlebotomy
12/26/2019 did tellmegen.com DNA test, to see if other diseases, check DNA, and check medicines of how they work within my DNA  Pharmacogenetic

1/1/2020 new drug coverage plan
1/2/2020 called by  insurance about dopamine and second call for ampyra.
1/6/2020 Dr go refill. Had influenza vaccine for double strength,  and
Pneumococcal conjugate vaccine. Pv13
1/8/2020 CMP done by dr nurse neurologist
2-2020 mild kidney impairment. 1.87 high creatine
1/19/2020 started Name brand CYMBALTA
1/23/2020 MRI t spine . No ms
Vertebral body heights and marrow: Multilevel thoracic spondylosis with
osteophytes, facet arthropathy. Minimal degenerative endplate changes at
T12-L1 anteriorly
Artifact across the upper thoracic cord is seen outlined by an arrow
(series 7 image 13).
2. Mild degenerative changes within the thoracic spine.

2/12/20  UC Davis injected botox into both calves, into both sides of neck more on right side. Used guidance machine. Had grad student with him. 2 hrs spent.  Head not had botox in six months
Had to get approval for botox.  Botox lasted 54 days before major Charlie horse, neck spasms.
2/01/2020  (HCC), Cervical radiculitis
Biallelic mutation of HFE gene
3/14/2020 updated shingles vaccine.  Need redone two months
3/16 blood test Dr testosterone 1.0 ml down from 1.75ml
3/23 Dr  and  Dr by video chat. Question on testosterone amount came up.
3/24/20 sent over all meds with pharmacy. Forgot needles. Tellemedicine chat
4/10/20 testosterone changed to 0.5ml from 1.0 on 3/16, was 1.75 for weekly 3/13/18
Total T=1008


Thank you for reading, please email me  with specific questions or other links I can Add, or if others have had high testosterone therapy that has helped
EverchangingMS@Gmail.com

Stay safe out there with covid-19 going on.
JoeY

Mis-Diagnosed before Multiple Sclerosis

 This blog takes you through a misdiagnosed and my being diagnosed with Primary Progressive Multiple Sclerosis, but the first mis diagnosis was Chronic Regional Pain Syndrome.


Just to talk about mine, and what works with me, probably will not work with others because of their DNA make up of genes, and other factors.
I was going to put lots of links to what was going on, but figured you, as a reader, or scientist, could follow, or look up.


A regiment I have been on for over eight years, which keeps me going, of twenty four medicines right now, with a Correct Diagnosis.   But this was not The case at the beggining, when they were trying to figure out what was happening.

The first part was during diagnosing me.  They diagnosed me with CRYPS, chronically regional pain syndrome... which is not much better than being diagnosed with Multiple Sclerosis

The Mis Diagnosis was for about a year and a half.

I remember Dr Quack, as I would call him, told me something is wrong with you, but the insurance (from  A large corporation working for, self insured) would not let him run any tests.  My hands were doughy, feeling, sweaty, but calmy. These were almost frozen in a grasp position. My pain would cross over from one leg, thru both arms and down (or up) from the other leg and hands.
I could not different which way The pain was traveling, but the Dr said impossibe.

  The Dr tried me On 0.2 MG of clonidine. This is a heart medicine, but also a old MS medicine. This gave relief to my hands. He had me go to a 0.3 MG tablet, and back down to a 0.2 MG tablet to find differences. This took months, to see the difference.  A 0.2 MG was decided on in 2010, with a lot of unknowns with the cryps diagnostic.

He had my blood pressure checked sitting, standing, lying down.  This still may be of help to future scientists, as these were far off on readings.  My current heart Dr encounters it to multiple sclerosis, as, like I am always running a marathon, even though my body is sitting.

The clonidine was increased to a 0.3 in 2019 to again help the claw fingers from continuing.

Tramadol for pain was tried, with horrific effects, causing no urination.
Soma was tried, as a muscle relaxer.  It Wired me, instead of relaxing muscles. Allergic reactions to both.

 indomethacin was given for pain. It burned a hole in my stomach to this date.  The ibuprofen was used for pain and inflamation. Another nasid that wrecks your stomach. But does help in given circumstances.

A CRYPS diagnosis was given.  Chronically Regional Pain Syndrome. Not A good diagnoisis.

The only neurologist in the area did test on both wrist, only after the hospital emergency room splintered both wrist, As carpal tunnel syndrome, and to follow up with local neurologist.

The only Neurologist, wanted to prove the hospital wrong, stating There was nothing wrong, doing his own tests to tell the insurance nothing was nothing wrong. This included false records, by ice being put on wrist, to get readings he wanted. He needed to keep company "A" satisfied.
his office tried to send me to a private MRI, at My expense, which was not a option.

But the worst Drs were to come, that were required to see, as because it happened at work, I was forced to their workman compensation insurance program, required to see their doctors.

The company was large enough to be self insured, and had the state insurance commissioner, actually working for them.  Yes a conflict of interest.

I was sent to one dr , who wrote a 50 page report, on how I ran to the room, which was three feet from me, had me doing all these items, which never happened, of arm movents, weights, calisthenics, while interviewing me for 20 minutes.  The actual visit lasted less than three minutes with this Dr, and none of that happened. A quack, making money from the insurance company to say NO to everybody that came in.

A neurosurgeon was seen, and she stated you don't even have a physical done yet. Why is this big company's insurance sending you to me, except that I don't know if anything is wrong. Perhaps 45 seconds of her time, wasted, except for a long report to say nothing was wrong she could see, as that was what she was paid to do. You can not diagnosis a patient that a physical was never done.

this went back and forth, and thus perhaps the crops diagnosiis, as something was definitely wrong.


 As soon as able I went to my local dr.
He was able to do a little more testing. Sometimes knowing the the insurance company needed a test, but you had to say you were deficient. A shot of vitamin B  injected, then going over to give a blood sample to see where you are at. Quite backwards. It showed a high vitamin B on the test.  Testosterone was the same way, except I was quite low on the return test, that's when testosterone  therapy started for hypergandlosim I injections continue to this date with testosterone injection.

He ordered MRI of each section of the back and neck. These approvals took a long time to get, one at a Time.  So we are talking some long  period of time.  This is before I knew the magnet source was Not a very strong magnet.

Gabbapentin was added for nerve pain for the legs. Then
A pain Dr was seen, as my GP was limited what he could do

The pain Dr  was added. She prescribed something to get rid of pain.
Opioids,  then enough morphine that the pharmacist asked me if I was picking it up for someone near death to control the pain. The opioid plugged me up, so generlac was added, to help by my GP

The Brain was the last to get a MRI done.  In the report, in bold NO MS. All the mri's, the film is read by one person. Perhaps not quite knowing everything to be nice.

My GP, said they did not go far enough, as I found out years later, he suspected Multiple Sclerosis, not CRYPS.
He sent me to a Neurologist in the city.

Same mri, film, and much more tests, including new neurologist doing wrist, showing me to have cararple tunnel both wrist, as he was not working for company "A", but independent, and knew His stuff.

Then a spinal tap he did. A quite well known  known neurologist, who knew how to do this, being in his 70s. Spinal tap done by him in his office. He ruled out everything else, blood diseases,and other diseases.

I had onoglycolic bands were in my spinal fluid ( pieces of the mylen coating I would call them).
The MRI film, if knowing what to look , showed a bright lesion and past few lesions could be seen. Looking back, I probably could tell you even the year, date and circumstances.

He did show me the criteria needed, and the three spots, and old spots. Once you knew, you could easily find them.
A diagnosis, I was ready for, learning all and everything I could by research and asking Doctors.  Primary Progressive Multiple Sclerosis, with degenerative disk disease.

I was titrated off all opioid and morphine from the pain doctor.

 Lyrica and Cymbalta are used in pain for MS. You can not tell the insurance company, or they Would deny the combination.
Lyrica  was added, as it works on different receptors than gabapentin, which was also increased, as the nerve pain.

The real name brand cymbalta improved my mood, which I did not realize was in the dumps for months.  A positive I had not realized.

Nortriptyline was added, titrated up. For nerve pain at night.

Ibbufferin  was added for chostocrondrtis, as the only thing that works,  I should of asked wils dad Bruce, who was stricken with a bad case of rhemutoid arthritis, who knew what worked. He was my partners dad, filled with info, and a great outlook, even though bed ridden. He passed away a few years ago, as I write this in 2020.

Omeprozole was added to help the stomach. In latter years ranitidine also added. This medicine was recalled, and  tamodine replaced this in 2020

A lot has happened since the mid disgnosisis.

I had GPs at the Indian clinic, as they were The only game in town taking my insurance.  Some Great. doctors, and some worst Drs, that I actually went back to my old GP, who had sent me to the out of town neurologist.
He changed his staff overnight, and the new staff did not follow thru, so back to the clinic. 

This provides me with a excellent GO Dr. He could tell I did not have a torn rotator cuff, as another quack Dr said.

The university wanted to put a metal plate to hold up my neck. Invasive major surgery. When getting ok from my other drs, my GO stepped up and I listened to him.  I asked the surgeon, how much pain was caused by ms, and how much was caused my MS. They all left the room, and surgery never done. Best decision made. My Neurologist, against it, put me on Hyaluronic acid and chondroitin sulfate. That, along with botox to relieve muscle spasms worked. More on that in future blog...

it took a year and a half, which I find is fast fire someone with Multiple Sclerosis.

I was glad to be off opioids, and morphine. I

Currently I am maxed out on medicines I can take.  I see 8 or so  specialist at the university.
The only thing they can offer now is low dose naltraxadone. I am looking On input from others, and On anyone that has done this treatment, or Chinese acupuncture.

I was off botox since August 2019, due to go my neurologist taking a leave of absence. I wrote him and the state a letter, showing how many people they hurt.
six months to get another Botox specialist. Ona from us davis, the head professor. Names of muscles rolled off his young as he used a needle guidance machine to inject into both calves and neck.

This reduced the pain level, as the neck was pulling in bulging discs against the nerves. This has helped tremendously.

I think back of the mis diagnoisis, and where it would of led.
perhaps to the same point now, and different medicines used? Or the
quality of life being non exsistent.  The plate in my neck would of never happened, as once they tried, they may of uncovered the H63d gene, causing Iron overload, no place to screw the plates to, and no healing, due to ME and the autoimmunity that goes with it.

can low dose naltraxodone help or make me worse?

Would love your stories of his diagnoses of anything.
cheers
JoeY

In the beginning

I was healthy, never needing to see a doctor. Never would I have guessed or known anything about ms changing my life overnight, or what MS ever was.   I was 49, active, going out on camps into the wilderness areas with my partner. A drive to the ocean and camping the coast in remote areas was so much fun with Wil,  Going to Hot August Nights, camping, and going thru every isle of three separate Super walmarts to stock up on items not found in the small town we live in was part of the fun, along with walking the isles of the antiques and flea market vendor's, then going thru ever isles of cars displayed at every hotel.

Searching for the best spot to eat, we always made that  into a adventure. Geo caching came later, with even more spots found in remote locations on our travel paths, giving us different views of areas, and camping spots.

MS hit me hard in 2010, and keeps progressing.

It was late December, I took a Fall while walking to the customer service booth, to get cigarette for A customer.  A puddle of water was being hidden by another employee. He Watched me fall, but corp policy is not to say anything.. I fell hard. But needing a job, went back to my station as a cashier, scanning products as fast as possible.
A manager, took me to the side to file company papers, as a incident report, as he did not want to loose bonus for no accidents that quarter, since it was December 18th.

Within three months, I was holding onto the counter for support, my vision going double, gait was off, my wrist hurt, and then my hands froze up, dropping groceries.

  I never did see the video of my fall, that triggered MS, that they said  laid dormant in me.  I will spare the details of a broken workers comp system USA has, but lawyers are terrible, and cases drag on, without medical care.

The local bandage hospital we have in town initially splint up both wrist, gave me some strong pain killers, but noticed my leg dragging before leaving.  Referred me to a neurologist, as they had none, and I must see the company Dr.

Dr Quack, I call him yelled terribly at his patients. You had to see a company Dr, not one you chose. The best thing he told me, is "You have something going on, but they (the company) will not let me run any test to prove one way or the other"

My hands were clammy, doughy to the touch. Right side pain went to left side and crossed back. He told me, impossible, as the right brain doesn't talk with left brain. But something was not right.

Clonidine, a inexpensive blood pressure medicine was used off label. This unclenched my hands. He had me go off, titrated up and down, with results of hands clenching up, and being doughy.
But that worked.  I did not know it is a old drug used for MS off label.  a inexpensive drugs used for pain and inflammation.

A local Neurologist was seen. Another quack, as said I was fine, faking symptoms.  Even measuring electrical flow in my wrist, to say no issue, with warming or cooling wrist to obtain his results.  Not sure how you can fake symptoms physically seen, and what was going on.  Just knew body pain, wrist plain, and not being right.

A local GP was finally seen. Took six months to get the insurance company to approve a MRI.  In the meantime that year I was sent to a pain management Dr.  From opioid, up to Morphine was used. Initial diagnosed CRPS, "Chronic Regional Pain Syndrome", as they needed a diagnosis for pain med.  The local pharmacists asked me if I was picking up for someone on their deathbed, as the amount of morphine given.

 The local hospital used again.  MRI came back, read by the only person who reads every one's. No MS in big bold print. The Local country Dr  said they did not go far enough. Sent me to a Neurologist out of our little town.

  He looked at the film, yes before CDs, each film would be looked at.  Four were told to keep in order, and he scheduled blood test and a spinal tap in his office immediately.

These came back with ontological bands, the rest ruling everything out.

Treatment started with Copaxone.
Pain Dr weaned me off opioid and Morphine.  Cymbalta and Lyrica   were used in combination to treat Pain in Multiple Sclerosis.  The electrical zaps, Gabapentin and Nortriptyline.
 More about that in another blog though.

Guess this is a good starting point for my blog in hope to help others.

Thanks for reading.

For more go to my blog everchangingms.blogspot.com

Thanks for reading
 Joe

Botox, OnabotulinumtoxinA

I would never think a procedure would be in your mind, as one to look forward to.

But Botox, or  OnabotulinumtoxinA t is used o treat dystethia, or muscle stiffness, muscle cramps, spascisity, walking problems, movement problems.  
A treatment which people with Multiple Sclerosis get.

Botox can be used to treat many symptoms associated with multiple sclerosis. Patients who have spasticity affecting their arms or legs may be good candidates for botulinum toxin injections to relieve painful spasms and improve mobility.

I have had botox treatments since being diagnosed  of multiple sclerosis. I had maxed out  baclofen  early on. My Neurologist, was a old timer, with no computers. He worked as a stand alone neurologist, with a staff of two office gals, one who did your appointmens, in her hand written book.  She had your paper file for Dr to go thru, ready for him.. The other gal had a real old computer, she could obtain the necessary forms on, and Bill the insurance. I am sure another gal took down info for billing outside of his clinic.

He used the old time scrypt, decypherable by him and a few Drs I talked with. Looked like scribble marks, but so does shorthand.  Dots of injection sites, other records were transcribed, like the sleep study.  EMG, was always followed up on how fast nerves responded. Record keeping in each patients file, as Dr would do before electronics came out.

A fax machine was used to fax prescriptions, but the new pharmaceutical companies did not like.  The neurologist would fill my Gabbapentin and Provigil.  I found a way around this by sending in original prescriptions for mail order to them, as faxes kept getting lost, or the insurance company would say, we've tried to contact your Dr multiple times, with no response. This happened by the insurance computer calling at 2am, not saying what was needed from the dr. It became a a problem for his staff, their limited time, and hours listening to messages, and hours I spent trying to find where the problem was. It was the insurance companies computer not recognizing the Drs Faxes.

There were a couple other part time gals, who ran the emg machine, sleep study, and other test.I

Botox works by blocking the release of acetylcholine from nerve endings. Acetylcholine is a neurotransmitter required by muscles for muscular contraction. By eliminating the ability of a muscle to contract, it relaxes, thereby decreasing spasticity and tone.

Spasticity is a condition in which muscles exhibit almost constant contracture or activity, leading to loss of range of motion, decreased function, and even pain.

Spasticity occurs after an area of the brain or spinal cord has been injured, leading to weakness and increased tone.

When an arm or leg which is affected by spasticity is moved by an examiner, there is involuntary resistance to that movement.

Often, this spasticity is made worse when the speed (or velocity) of the movement increases.

Spasticity is often seen after a stroke, traumatic brain or spinal cord injury, or in cases of multiple sclerosis.

In some cases, spasticity can be associated with development of involuntary tremors.

The blockade of acetylcholine does not occur immediately. Most patients do not begin to see the effect of a botulinum toxin injection for a few days, and it may take a few weeks for the maximum benefit to become apparent.

This neurologists was quite informed on latest developments, what was working, and what did not.  He could do a spinal tap right in his operating room, and send labs out, have results quickly.

This he did with my botox injections every three months, as that's all the insurance would pay for is every three months. My botox lasted 62-64 days, I would record in my book I brought in.  Botox day was describing muscles inside the leg, or outside ones. This would include stiff muscles in the neck, Charlie horses.
Or how the toes were curling in our out.
He knew where to inject the botox, the debth, and feel the muscle spasms.

Three weeks later was the follow up, where he would ask me what was in my book note book of questions, comments, and research. I had done.  A question answer period, sometimes a booster shot for botox, but lots of questions answered, and items to try to help.

Botox has a Black Box  warning.
From their site"

https://m.youtube.com/watch?v=4x9yRjrN0iQ

IMPORTANT SAFETY INFORMATION

BOTOX® may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX®:

Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are pre-existing before injection. Swallowing problems may last for several months

Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms including: loss of strength and all-over muscle weakness, double vision, blurred vision and drooping eyelids, hoarseness or change or loss of voice, trouble saying words clearly, loss of bladder control, trouble breathing, and trouble swallowing

The black box warning continues an can be read at botox.com

BOTOX® may cause loss of strength or general muscle weakness, vision problems, or dizziness within hours to weeks of taking BOTOX®

The dose of BOTOX® is not the same as, or comparable to, another botulinum toxin product. .

Other side effects of BOTOX® include: dry mouth, discomfort or pain at the injection site, tiredness, headache, neck pain, eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, dry eyes; and drooping eyebrows.

For more information refer to the Medication Guide or talk with your doctor.

My Neurologist went on a "medical leave" just before botox was to be injected. This left me with the last injection being August 2019. My calves were tight, hard as rock before I was able to see a new Botox Neurologist. His First opening being late February 2020

The University Hospital used a EMG guidance computer to assist the neurologists and his student. A special chair to sit it that allowed easy access to multitudes of muscle names the Neurologist rolled off as he injected The multitude of sites.  The machine had sound, I could not see the graph. I just knew he was injecting the proper muscles and depth, from having them from old neurologist.   Both calls were hard as rock, some pulling on toes, or the top and bottom of the foot. This causes a lift problem with the foot.

My neck muscles had spasmed extensively. These muscles control the arms, which had signs where muscles were pulling you could see the indent near the elbow. Muscle names rolled off the Drs mouth as injections went deep into the muscle. I recognized the trapeze muscle, controlled by the neck, but had no idea of the names, or how deep these other muscles were. These were all injected into the neck location, on both sides.  The Doctor was more complete with more botox used into all the problem areas.

I will see him back in three months, keeping track in my book, of side effects, 

helpful and hopeful for great results.

I hear it helps for migranes and more.

Have you had Botox? And your story?  Chime in!
Cheers
JoeY

Multiple Sclerosis DNA

                                       Photo of gene from wikipedia.org


Multiple Sclerosis blog of DNA Technical reading.

I did a 23and me home testing.
If you did a health dna, this will show up under celiac diseases.
It may take some reading, and researching, but this will show up.
The HLA-DRB/DQA gene

There are links to folllow, but for less confusion, just Google the gene.
there are many variants I show below, having a complete DNA done of me. Everybody may be different, but hope this helps science.

https://ghr.nlm.nih.gov/gene/HLA-DQB1#conditions
https://ghr.nlm.nih.gov/gene/HLA-DQB1#conditions

Look up on Google this gene, and look under auto immune disorders

HLA-DQB1 gene

major histocompatibility complex, class II, DQ beta 1

Normal variations of the HLA-DQB1 gene have been associated with several additional disorders. Most of these disorders have an autoimmune basis, which means they occur when the immune system malfunctions and attacks the body's own tissues and organs. Autoimmune disorders that have been associated with HLA-DQB1 include multiple sclerosis, pemphigus, and type 1 diabetes (described below).

Multiple sclerosis is a chronic disorder of the brain and spinal cord (central nervous system) that causes muscle weakness, poor coordination, numbness, and a variety of other health problems. Several variations of HLA-DQB1 appear to increase the risk of developing this disorder. One of these variations, HLA-DQB1*06:02, is the same version of the gene that increases the risk of narcolepsy.

Some evidence suggests that the HLA-DQB1 gene may also play a role in several forms of pemphigus, a condition that causes severe blistering of the skin and mucous membranes (such as the moist lining of the mouth).

It is unclear how different versions of the HLA-DQB1 gene influence the risk of developing autoimmune disorders. These disorders typically result from a combination of multiple environmental and genetic factors. Changes in other HLA and non-HLA genes, some of which remain unknown, also likely contribute to the risk of developing these complex conditions.

23and me

We detected a variant linked to the HLA-DQ8 haplotype.doing

                                                    Photo from wikipidia.org

https://en.m.wikipedia.org/wiki/HLA-DQB1

https://en.m.wikipedia.org/wiki/HLA-DQB1

Multiple sclerosisEdit

Certain HLA-DQB1 alleles are also linked to a modest increased risk of multiple sclerosis.^[11][12]

See scientific details
I am not a doctor, or scientist, just researching, trying to understand the aspects of Multiple Sclerosis is having on me, and the commonalities this disease has of raging they my body.

Further investigation shows these SNP I have.

SNP : rs12487066

SNP : rs312993

SNP : rs3135388

SNP : rs6897932

SNP : rs7326018



Technical Report for these genes from DNA done 12/2019

SNP : rs12487066

Gen o Región : 3q13.11

UserSNP usedGenotypeAdjusted Odds Ratio*lrs12487066CT0.97

Multiple sclerosis has a clinically significant heritable component. It was conducted a genome-wide association study to identify alleles associated with the risk of multiple sclerosis.

It was used DNA microarray technology to identify common DNA sequence variants in 931 family trios (consisting of an affected child and both parents) and tested them for association. For replication, we genotyped another 609 family trios, 2322 case subjects, and 789 control subjects and used genotyping data from two external control data sets. A joint analysis of data from 12,360 subjects was performed to estimate the overall significance and effect size of associations between alleles and the risk of multiple sclerosis.

A transmission disequilibrium test of 334,923 SNPs in 931 family trios revealed 49 SNPs having an association with multiple sclerosis (P<1x10(-4)); of these SNPs, 38 were selected for the second-stage analysis. A comparison between the 931 case subjects from the family trios and 2431 control subjects identified an additional non-overlapping 32 SNPs (P<0.001). An additional 40 SNPs with less stringent P values (<0.01) were also selected, for a total of 110 SNPs for the second-stage analysis. Of these SNPs, two within the interleukin-2 receptor alpha gene (IL2RA) were strongly associated with multiple sclerosis (P=2.96x10(-8)), as were a non-synonymous SNP in the interleukin-7 receptor alpha gene (IL7RA) (P=2.94x10(-7)) and multiple SNPs in the HLA-DRA locus (P=8.94x10(-81)).

Bibliography

International Multiple Sclerosis Genetics Consortium. Risk alleles for multiple sclerosis identified by a genome-wide study. N Engl J Med. 2007 Aug 30;357(9):851-62.

SNP : rs3129934

Gen o Región : C6orf10

UserSNP usedGenotypeAdjusted Odds Ratio*rs3129934CT0.97

Multiple sclerosis is a chronic inflammatory demyelinating disease of the central nervous system with an important genetic component and strongest association driven by the HLA genes.

It was performed a pooling-based genome-wide association study in which Comabella et al. described eight SNPs validated in Spanish Caucasian cohort and US Caucasian cohorts. The most significant association was obtained for SNP rs3129934, which neighbors the HLA-DRB/DQA loci. Said SNP is associated with an increased risk for multiple sclerosis. The OR was 3.0 (CI: 1.8-5.0; P = 1.4×10(-5)).

Another studied polymorphism was rs7326018 which is one of the eight SNPs associated with increased risk for multiple sclerosis. Its OR was 1.8 (CI: 1.1-2.9, p = 0.0228).

Bibliography

Comabella M, Craig DW, Carmiña-Tato M, Morcillo C, Lopez C, Navarro A, et al. Identification of a novel risk locus for multiple sclerosis at 13q31.3 by a pooled genome-wide scan of 500,000 single nucleotide polymorphisms. PLoS One. 2008;3(10):1–9.

SNP : rs3135388

Gen o Región : 6p21.32

UserSNP usedGenotypeAdjusted Odds Ratio*rs3135388GA1.81

Multiple sclerosis has a clinically significant heritable component. It was conducted a genome-wide association study to identify alleles associated with the risk of multiple sclerosis.

It was used DNA microarray technology to identify common DNA sequence variants in 931 family trios (consisting of an affected child and both parents) and tested them for association. For replication, we genotyped another 609 family trios, 2322 case subjects, and 789 control subjects and used genotyping data from two external control data sets. A joint analysis of data from 12,360 subjects was performed to estimate the overall significance and effect size of associations between alleles and the risk of multiple sclerosis.

A transmission disequilibrium test of 334,923 SNPs in 931 family trios revealed 49 SNPs having an association with multiple sclerosis (P<1x10(-4)); of these SNPs, 38 were selected for the second-stage analysis. A comparison between the 931 case subjects from the family trios and 2431 control subjects identified an additional non-overlapping 32 SNPs (P<0.001). An additional 40 SNPs with less stringent P values (<0.01) were also selected, for a total of 110 SNPs for the second-stage analysis. Of these SNPs, two within the interleukin-2 receptor alpha gene (IL2RA) were strongly associated with multiple sclerosis (P=2.96x10(-8)), as were a non-synonymous SNP in the interleukin-7 receptor alpha gene (IL7RA) (P=2.94x10(-7)) and multiple SNPs in the HLA-DRA locus (P=8.94x10(-81)).

Bibliography

International Multiple Sclerosis Genetics Consortium. Risk alleles for multiple sclerosis identified by a genome-wide study. N Engl J Med. 2007 Aug 30;357(9):851-62.

Gregory SG, Schmidt S, Seth P, Oksenberg JR, Hart J, Prokop A, et al. Interleukin 7 receptor alpha chain (IL7R) shows allelic and functional association with multiple sclerosis. Nat Genet. 2007;39(9):1083–91.

SNP : rs6897932

Gen o Región : IL7R

UserSNP usedGenotypeAdjusted Odds Ratio*rs6897932CC1.06

Multiple sclerosis is a demyelinating neurodegenerative disease with a strong genetic component.

Previous genetic risk studies have failed to identify consistently linked regions or genes outside of the major histocompatibility complex on chromosome 6p. There is a study in which was described the allelic association of a polymorphism in the gene encoding the interleukin 7 receptor alpha chain (IL7R) as a significant risk factor for multiple sclerosis in four independent family-based or case-control data sets (overall P = 2.9x10(-7)). Further, the likely causal SNP, rs6897932, located within the alternatively spliced exon 6 of IL7R, has a functional effect on gene expression. The SNP influences the amount of soluble and membrane-bound isoforms of the protein by putatively disrupting an exonic splicing silencer.

This gene encodes a protein called alpha-IL7R. This protein plays an important role in how two growth factors (IL-7 and TSLP) affect specialization and maintenance of various immune cells.

IL7R-alpha protein can take two different forms. One way is anchored in the membranes of immune cells, while the other form is released by the cells into the bloodstream. The relative amounts of the two forms can affect the signalling amount mediated by IL-7 and TSLP, and therefore change their action on the immune system. Rs6897932 allele (C) increases the amount of free IL7R-alpha.

Since multiple sclerosis could be seen in autoimmune diseases, it makes sense that a SNP in a protein involved in the immune system would be associated with the disease. Furthermore, it has been observed that IL-7 signaling is altered in such patients.

Changes in IL-7 signaling could lead to the development of multiple sclerosis in several ways: through spontaneous reactions in immune cells and decreasing the ability to defend them, favouring chronic infections.

Bibliography

Gregory SG, Schmidt S, Seth P, Oksenberg JR, Hart J, Prokop A, et al. Interleukin 7 receptor alpha chain (IL7R) shows allelic and functional association with multiple sclerosis. Nat Genet. 2007;39(9):1083–91.

Lundmark F, Duvefelt K, Iacobaeus E, Kockum I, Wallström E, Khademi M, et al. Variation in interleukin 7 receptor alpha chain (IL7R) influences risk of multiple sclerosis. Nat Genet. 2007 Sep;39(9):1108-13.

International Multiple Sclerosis Genetics Consortium. Risk alleles for multiple sclerosis identified by a genome-wide study. N Engl J Med. 2007 Aug 30;357(9):851-62.

SNP : rs7326018

Gen o Región : 13q31.3

UserSNP usedGenotypeAdjusted Odds Ratio*rs7326018TT2.09

Multiple sclerosis is a chronic inflammatory demyelinating disease of the central nervous system with an important genetic component and strongest association driven by the HLA genes.

It was performed a pooling-based genome-wide association study in which Comabella et al. described eight SNPs validated in Spanish Caucasian cohort and US Caucasian cohorts. The most significant association was obtained for SNP rs3129934, which neighbors the HLA-DRB/DQA loci. Said SNP is associated with an increased risk for multiple sclerosis. The OR was 3.0 (CI: 1.8-5.0; P =1.4×10(-5)).

The rs7326018 polymorphism is one of the eight SNPs associated with increased risk for multiple sclerosis. Its OR was 1.8 (CI: 1.1-2.9, P = 0.0228)

I hope this Technical report will be useful, and would love feedback from scientist, Drs, or you, exploring genes related to Multiple Sclerosis, and if others are coming up, or I will add to this page when other genes from DNA are found.

Cheers
JoeY