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

Changes

This last year went by quickly. Way to quickly.
Changed happening, seems like daily since  mid 2019. Guess that's why I named this blog everchangingms.blogspot.com

A quick change of Doctors was needed. My Neurologist that injects me with botox went on medical leave in November, having me scramble to obtain meds prescribed, and a new person to administer Botox. This won't happen until February 2020, as how busy  Specialized Neurologist are. So dealing with Charlie horses, cramps, stiffness and neck spasms.  The quinine works wonders, but limit its use. I think the neck spasms are upsetting the degenerative did disease.

Then came my GP. Highly recommended by the main Dr at the clinic, who was watching over me until he had a new Dr hired. I had entered with extremely high hopes.

Some Drs are not made for patients, or some patients not made for Drs.  I let him give his talk, with my blood pressure  rising even higher, as what he was saying, never touched or examined me.

The most frustrated I have ever been. He should of had my heart rechecked, as knew extremely high entering. He left in huffiness.  I then left, almost in tears, not making another monthly visit.

But then good news, was I was able to get a  new GP who actually took the time to read all my specialist reports.  He is doing his internship at UC Davis  He Looked at blood levels, and re ordered some that were in concern. Spent a lot of time with me, and concerns.

Then came the insurance change. CVS bought Aetna, who had purchased my drug plans over the last eight years. The USA government said CVS was to big, and made them sell off their drug plan.

Their new company was doubling my rates, with less coverage, and deleting other drugs.   I emailed  Debbie from Area 12,  who helps elderly people find plans. She had helped me eight years ago.  She did find me a drug plan, that covered most of my meds, requesting Prior Authorization for a few. That brings us almost current to 2020, but not quite.

A MRI was scheduled after seeing my neurologist, of my neck and brain in December. However  New symptoms started about a week later. Tingling electrical zaps going down into my fingers on my right arm hand.   Another appointment was made to go over the MRI. But looking at this, I do not think they compared it to original, so left my team a message to do that. The main two lesions in my brain looked unchanged, but my degenerative disc disease in my neck progressing.

Two years ago, the pain jab in my right shoulder was so extreme, I switched GPs, as one said I tore the rotator cuff from across the room, doing nothing. A new Dr scheduled a MRI, showing two discs bulging into nerves. I failed at prednisone injected. A surgery was scheduled, but cancelled, when they could not tell me what was causing the pain.  MS or the discs.  Best decision not to have surgery. There xray machine was more powerful than the MRI machine at our local hospital. There was nothing to attach a metal plate to, as osteopenia. 

Then both the H63D gene (  Link https://rarediseases.org/rare-diseases/classic-hereditary-hemochromatosis/#general-discussion ) were found mutated, when certain  blood levels were off, causing Iron overload. hereditary Hemochromatosis WebMD

if they needed to give me blood, for every quart out in, two quarts would need taken out, as it would attack my body, creating me to make more iron. This goes for raw shellfish, or their shells  also.  So no surgeries was added to my DNR.
17 phlebotomy, left my body with no iron, slightly anemic, which comes with its own problems.

on a good note, my Cardiologists said my heart is the best thing going for me.
Hypertriglyceridemia (Medscape) going on though. A Drug Fenofibrate  see this link,  was used, but I've ended up as less than 1% of the population of a side effect that raised my creatine to alarming rates for five of my doctors. This was stopped, replaced with Vascepa. https://vascepa.com/

Our Westie and Poodle, Dixie and Armani

December also brought a huge skin rash from A Copaxone injection. I had UC Davis look at it, and the Copaxone Nurse. I am now limited to injection areas, as have no fat to inject into. So my Neurologist had me look at  ocrevus.com And mayzent.com to look at.

And yes 2020 now. Need to go on more short Amazing Races.
Enjoy the Quality of life,  All my Drs know is goal to maintain.

2020 brought that into full perspective, when a neighbor passed away, and days later their son, who went to school with my partner.   I've known for 20 years .
his mom has Alzheimer, which complicates this all. His partner has taken it quite hard.  She will end up in nursing home for a short time.

I will leave in a good note.  My partner and I did a DNA and Gut sample kit that may give more inside info on health and Gut issues..  Looking for Genes that may be related,  medication on how it's used, or not being used,  and conditions I may have control over.

Another MRI is scheduled,   a interview with Families USA for my next blog. A federal to many more specialist.

Thanks for reading.
Join my blog email. Give me feedback if you have tried any of meds.

JoeY

" QUALITY OF LIFE "

New Doctors, New Relatives, New Insurance, New Symptoms, all come with their own part of the Multiple Sclerosis Puzzle.  I stay anemic a year after phlebotomy. This is a unknown by the cancer specialists.

23and me has shown me a list of new relatives. Distant cousins from 4th great Grandparents, way down a family tree line.  But to be diagnosed in your seventies, that you have the same match of a H63d Gene, I have talked about that  puts you into iron overload.   Hereditary Hemochromatosis.
This alone was another piece of the puzzle on how many generations this has gone thru. Even the current generation seeing this problem, but with different eyes than those of past generations.  Even about same heart beats.

Another Gene showed up on 23andme.  HLA-DQB1.  This 23and me shows as a gene for celiac disease. But you have to dig in deeper in the Gene. Under the Government site,  Autoimmune diseases are listed. One being Multiple Sclerosis.
https://ghr.nlm.nih.gov/gene/HLA-DQB1#conditions.

I wonder how many scientist, or scholars can put all the pieces togeaather, including the vitamin D of 180,000 iu / week I need . (eighteen ten thousand iu pills)

A link I need to send to my Neurologist, but we talked about it. The session goes way to quickly with my Neurologist.  She was surprised that the soonest they can have more Botox on me is mid  February 2020. My calves and  neck stay tight as a knot. The last Botox was in August 2019.  My Botox Neurologist went on Medical Leave, just before my next injections were needed. This effected thousands of his patients.  I sent a few letters out because of the facts.

I scrambled for a New Doctor to inject Botox, and see if my UC Davis Neurologist would handle prescriptions. The  absence by my neurologist left thousands scrambling like myself.

Botox works for about 64 days with me, but loosens up the spasms in the neck and both calfs, which control the feet. This also controls thigh muscles higher.
The neck one keeps my buildging discs in place and relieves the entire muscle to the arm.

So I went into scrambled mode, and my Neurologist at UC Davis filled medicines, and got a referral to the Head Professor at UC Davis for Botox,  for the first available appointment being February for My partner and myself. He uses botox  for migraines.

My Clinic, I go to for seeing my GP, has usually been good. A Excellent GO, watched after me for a year, and decided to go back to school. This left them with no Dr.  A wording he used,  "It's the Quality of Life that matters " sticks with me everyday.  I had first seen him when they wanted to do surgery on my neck for two herniated discs.  Was the pain jabbing me in my back and down to my fingers being Caused by The pinched nerve, or was it caused by MS?

The Head of the clinic Dr, came to keep track of me and medicines for about three months.  A Gracious Man, wanting to learn. He talked highly of the new Dr they hired.

 The following month, Dr X, stood across the room and accused me of not taking my meds, as my blood pressure was high (pain related).  Then he states, " I do not prescribe Lyrica, as that is a Dangerous Drug"  he states that a few times. This is one of my least dangerous medicines, for those  that take MS meds, many are black box warning meds are used, that  Makes lyrica look like asprin in comparison. You have to outweigh the positive effects against the negative effects, and each medicine works different. He did not attempt to touch me to see the pain, or listen to my heart, or recheck my blood pressure.  This was by far, the worst treatment I have had with a Doctor.

Note :  lyrica and Cymbalta are used to control pain in MS, and a GP should know that by reading .  Hyaluronic Acid from England, and chondroitin Sulfate has eased my neck issues, talked about with my Neurologist.

Not all patients are a good fit for a Dr, or is all Doctors a good fit for patients.

But On a Good Side, I got Dr. T. at UC Davis to be my GP. A residence, so for six months, but he studied all the notes from each specialists, and spent two hours with me, making sure "The Quality of Life" is my goal to keep.

But changes happen. Insurance companies started to buy each other out, including your local small pharmacist in the background over the years. CVS Pharmacy became so big, they bought Aetna out. The government stepped in, and put a stop, saying they got to big, sell off your drug plan.  So Wellcare bought them, eliminating drugs and doubling rates.  Consumer Reports has a great article drug-prices/the-shocking-rise-of-prescription-drug-prices

So a new company for my Drug Plan, with the help of  Director of the Area12.org.   https://www.area12.org/ to find, so most of my drugs would be On the plan. I am sure my Drs will have to pull out all stops to ensure I am on medicines needed, with Prior Authorization, and Medical necessity, and some perfect language.

Yet, another change happened, after my Partner injected Copaxone into my arm. Thought it was only a blood vessel he hit, so not much thought. But the bruise under the skin became larger, the crusting taking over slowly.  Three weeks later, I showed my Neurologist, who had her nurse look at it.

 She named off a long word, but it means the destruction of the skin, by the copaxone itself. Some need surgery done.
Feeling my arms, there is no fat to inject the copaxone into. So the arms are off limits. She had me call the Copaxone Nurse also, who came to see me at my house.

I had not seen her since starting Copaxone. She agreed, arms, no fat to inject into. My thighs, so tight without botox, only a small area left. My sides, nearer the back on small area, as other  injection site have become tough skin. The 1Stomach, because of my GI problems, was not bloated, but little fat, and some areas to stay away from.

So that will limit Copaxone injections in six months, or a year?

For those Scientists and researchers reading this, I asked the nurse, "Copaxone is made of a few amino acids.  What if you were to mix them into a smoothie? , instead of injections?". Makes sense to me, as I can buy all these amino acids from the store as a pill. Would you need some oil, and cook it into eggs?  I asked Copaxone the same question to ponder.

for my technical people:
"Copaxone Description:

Glatiramer acetate, the active ingredient of Copaxone, consists of the acetate salts of synthetic polypeptides, containing four naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine with an average molar fraction of 0.141, 0.427, 0.095, and 0.338, respectively. The average molecular weight of glatiramer acetate is 5,000 – 9,000 daltons. Glatiramer acetate is identified by specific antibodies.

Chemically, glatiramer acetate is designated L-glutamic acid polymer with L-alanine, L-lysine and L-tyrosine, acetate (salt). Its structural formula is:

(Glu, Ala, Lys, Tyr)x●xCH3COOH

(C5H9NO4●C3H7NO2●C6H14N2O2●C9H11NO3)x●xC2H4O2

CAS - 147245-92-9

Copaxone is a clear, colorless to slightly yellow, sterile, nonpyrogenic solution for subcutaneous injection. Each 1 mL of Copaxone solution contains 20 mg or 40 mg of glatiramer acetate and the following inactive ingredient: 40 mg of mannitol. The pH of the solutions is approximately 5.5 to 7.0. The biological activity of glatiramer acetate is determined by its ability to block the induction of experimental autoimmune encephalomyelitis (EAE) in mice.

Copaxone - Clinical Pharmacology"

So I expect more hickups along the way, perhaps some will help me more, like Ampyra name brand, https://ampyra.com/ has helped my walking,  but might not be right for everyone.

Cheers and thanks for Reading. Would love feedback.

Joey

Butterflies and Multiple Sclerosis

https://youtu.be/io6Yi_z7SpY

Instead of having a disease like Multiple Sclerosis, wouldn't you rather have the life of a butterfly?
They start as a beautiful caterpillar. Walking with many legs,  inching along.
Then they have to spin a web, cocoon, keeping it protected enough to make a transformation into this creature we know as a butterfly.
 With wings to fly around, flowers , each with their fragrance and taste. With others that also make their transformation. Their lifespan measured in minutes, being years to them.
Smart creatures to obtain such a transformation, and knowledgeable about what flower to try.  Caterpillar

I wonder if they, the butterflies, come down with any neurodegenerative diseases thru their lifespan.  Would it be interesting to be a butterfly for a while? A minute would be a year.

Just a thought, as MS is ever changing, and different for each individual for some reason.
A article in Readers Digest , April 2019,  page 45.  "New tool predicts MS Disability".   It points that Iron could be a precursor, as found in many MS patients "
A research article I found is here from  Healthline.com

That is the second neurodegenerative diseases I deal with. The H63d /H63d gene, part of the HFE iron regulator changed a protein that tells the DNA gene to be On or off that controls the uptake of Iron.
 I did 17 phlebotomy's since October 2018 thru January 2019. Seven months later, I stay real low on Iron. Slightly anemic, but do not see them doing any  phlebotomy for the rest of the year. I will see the cancer Doctor next month, that may shed light on why I am staying so low in iron.  Your blood is replenished every three months by your bone marrow, so it is strange.

I also must note that my GO Dr went on to further his education. This has actually left me in the hands of a real good GP, who is the head of all the clinics. He listens, and can tell from reports done by other Doctors, what is going on.  He said the best Activist is myself. If you have a disease, you sometimes know more than the Doctor.  A good Doctor will tell you if he does not know, or Send you to a specialist, or even another specialists if he thinks the first one did not go far enough. My GO Dr gave me his new email to keep in touch. That meant a lot.  I do have another GP, that I stay in touch with.

My GI issues have been ongoing, and I tried to figure what changed at the beginning of 2019. No new meds, but a major change. I did a ubiome gut report in the first quarter. Glad I did, as the Feds raided ubiome, and closed them down for insurance fraud.-----------Cnbc news article ubiom raided by feds
I am Trying to decipher months later what my Gut may be missing.

The phlebotomy helped lower my triglycerides.
Mutations in the HFE gene, favoring iron overload and causing hereditary hemochromatosis, are associated with primary hypertriglyceridemic phenotypes.  I was in this stage.

The HFE gene makes a protein in the intestine that regulates how much iron your body absorbs from your diet, including your food, vitamins, and medications. If you inherit two mutations in the HFE gene, it does't work properly
https://academic.oup.com/jcem/article/94/11/4391/2596710

https://academic.oup.com/jcem/article/94/11/4391/2596710


The change I realized, was the amount of phlebotomy done, and becoming anemic.  But this did not account for the Gut Microbes missing. I did stop the VSL#3 ds pro biotic, as I did not have Ulcerative Colitis, as led to believe for two years. New GI Doctor and GO Dr, showed me diagnosis, and why this Dr led me to believe I had UC. But I did not have symptoms.

VSL#3 ds may be crowding out the good bacteria. --------------------------------------------

My new GI Dr at the university of California, had taken me off Metoclopromide, which is used in MS  patients to help gut muscles move.  He put me on Trulance, that caused accidents. Something nobody wants to talk about.  He put me back on metoclopromide, once knowing how much that was helping, a three months off period.

I was switched to Linzess, polyethylene Glycol (miralax), along with Generlac (lactose).
I tried adding psyllium hulls, with no success.

I read up on many good probiotics that work in the lower Gut, so my new protocol is trying different ones, and to see if they will help. If anybody has recommendations, or a company Needs a review of their product. let me know!  Even looking at ones to help improve the mood.

 Both my new GP, and GI Doctor agreed on keeping the protocol, to keep things moving, without straining.
Seems to run as genetics I believe. As have siblings and my mom with similar issues of gut and intestines not flowing as perfect. I find in genealogy of many prior generations having same issues. They wrote it differently, and did not have medicine that is now available.   This can cause many problems, if chronic constipation is ongoing.  Much more if you are dealing with Multiple Sclerosis.  So No Straining, use a block of wood to prop your feet on, and reading material to relax and read. Yes, that is  the protocol now, for those that were told different.

Ok, back to being a butterfly for the moment. https://youtu.be/io6Yi_z7SpY
Cheers
Thanks for reading, and leave me some feedback!
JoeY

Pickle Juice

As I mentioned, this blog jumps around some.  This talks about Pickle Juice. Hype or Real.  Last year, as I was just reminded, from the Multiple Sclerosis Magazine,  I asked one of the Sponsors of the Bike Marathon, that had a booth for Multiple Sclerosis bike riders if the Pickle Juice they had, would help my  Spasticity with Multiple Sclerosis.  I would of loved the bike ride up the coast, and the wineries along the way.  I've ridden 50 miles once, but that was thirty decades ago. Knowing the Charlie horses or tight muscles are different then the ones for Multiple Sclerosis.  This I knew first handed, but was still curious if they had a product that would help.  We see a lot of bike trainers using our steep mountain roads to train on where we live, at 3,000 ft elevation.


Pickle Juice sent me a six pack of their product to try.  picklepower.com
 I checked with my neurologist if he was opposed for me to try. He said bike riders get muscle cramps from imbalance of electrolytes by peddling so hard for so long.

In Multiple Sclerosis, it's the sheath coating from the brain mis firing signals to calves, or other muscle groups, that cause them to tense up, or become Charlie horsed, and stay Charlie horsed until the signal from the brain let's up.

Giving pickle juice a try, yes it taste like fermented pickle juice, but without the pickles. A interesting product, as in its own bottle.  I would think gym training athletes, or bike riders that are needing quick electrolytes, or others on a rigorous routine would benefit that need the electrolyte balance, and from real fermentation of pickles, instead of a sweet drink.

It was a no go for my Spasticity however.

  I use some odd concoctions already.
Baclofen, I am maxed out on. A baclofen pump to be implanted has already been turned down years ago from reading some other blogs.

A small amount of diazapam is split up to help during 24 hours. I make my own oils from the marijuana plant, along with using alcohol to make other tinctures.  I am still looking for the proper combination or strain of the plant to utilize. If anyone has recommendations, or seeds, let me know.

I make my own quinine to obtain 30 mg. The same quinine used to make a Gin and Tonic water, just without the Gin.

 See my blog on Quinine-toxic-or-helpful? . A shot glass usually relaxes Charlie horses muscle.  This Needs followed by a neurologist and cardiologist, and may not be for everyone.  I do not have a gag reflex, as a swallowing study done showed

More interesting items is Mustard. A Tablespoon of plain yellow mustard has properties that science can not explain, as when it hits the stomach, it's effects start to release muscle cramps.
Sometimes it is slower than quinine, but works.

So if you are a avid bike rider, I would put a bottle in my pack, And give it a ten star. Worth trying picklepower.com

If you are a company, wanting me to review a product, let me know.

As for others, let me know what help with your Multiple Sclerosis cramps, Charlie horses, muscle twitches, the MS HUG, or different parts of the body, what muscle groups have the most problems.

My Neurologist, injects  onabotulinum toxin A into my calves, and into my neck muscles to calm these mis firing nerves, that cause me problems. It helps tremendously, and has kept me walking with a cane.  He is limited by insurance to doing this every three months.  It only last for about 62 days with me, and others.

Ampyra is used also, that has definitely helped me.

Thank you for reading
JoeY

https://rarepatientvoice.com/EverchangingMS/