Rare disease day

https://m.youtube.com/watch?v=7QKum6ihGyERare disease Day

Rare disease Day

Rare disease Day. Never knew that such a day existed, or that I would even be classified into a quite rare disease. As most people know reading this blog,  I have primary progressive multiple sclerosis. Going on over eight years now. My main treatment, or DMT, is Copaxone every day along with 24 other medicines.
 My partner and I attended Rare Disease Day in Sacramento last year. A wealth of information. The Rare Patients Voice, still need to make a video for.

But a Rare Disease was hiding in the comorbid  of what MS brings along to some people.  I have had optic neuritis, the MS hug, spasticity and more.  Last year, trying to get some blood figures up, without having a stroke, the endocrinologist sent me to the cancer Doctor.  He ruled out poly vercea genes, the main one of iron overload. and dug further . Two genes, one from both parents, on the HFE gene,  that's the one which controls Iron.  Anyways the H63d genes both had mutated, causing Iron overload.

Rare Disease Day again. This Gene, contacting Rare Diseases Link is so rare, H63d is only slightly been researched.  I have found 7 people with the H63d Gene causing Iron overload, but not of two people having both genes causing Iron overload.  Rare Diseases has been a wealth of information, or lack of, because of the rarity of this.  National organization of rare diseases was contacted "nord" was asked to make a registry for this from a organization called Gard  Link. This is the toolkit to start making a registry, so I hope you email me, drop me a note below so I can start this registry for science.
Still a project for me.
The H63d Gene causing Iron overload is passed down Thur generations I have found from 23andme.com heredity hemochromatosis another name to look for. You may pass it down to your kids, and then never having a problem, but their kids getting the rare H63d iron overload. Virtually in men, it means you store iron, and are never able to get rid of iron from a kid. This builds up, and is seen from 40 years old and older.

This shows up as high ferritin, Dr's dismiss. High iron, well probably a bad test, or you  something. Hematocrit and hemoglobin then play a role of being high. Thick blood also known as.

  Since I am on Testosterone therapy, I could not go higher on injections needed, as my blood was high on hemoglobin, and hematocrit.  Iron just above line, nothing to worry about. The endocrinologist sent me to the cancer center, where they found the elusive H63d Gene.
Phlebotomy is the only way to rid the body of iron, as it will get into organs and cause even more havoc. Believed to be part of Alzheimer disease also.

I did a round of 17 phlebotomy, and testing every week for six months. At that point, I was still anemic, with no Iron.  A year later, no Iron, but have taken some occasional iron supplements, after failing using cast iron skillets, raw spinach, and natural ways to absorb.

I retest in a few weeks, and see the the Cancer staff in a few weeks.  But part of a problem noted, is when my  Iron disappeared, my GI  issues bloomed at a incredible  full speed of problems.
There may be a direct link of no Iron to GI issues, or   GI issues is also a known factor with Multiple Sclerosis. I will have to go into more detail in another blog.

The H63d rare blood disorder, caused iron to build up in me since a child. Being caught quickly give the best chance.   I did find a distant cousin on my mother's side, from a fifth great grandparent, so way down the line. He has Iron overload, and is 72, and has the H63d gene.
Explaining this to him, his heart Dr., Thought his blood was thick, giving him a blood thinner, mis- diagnostic. He brought this new found info to his Dr's attention, did a single phlebotomy, that brought his Iron down. Complications can happen, especially when older, with a pacemaker.  He agreed that the Quality of life was the most important.  "The Golden Years may not be all what it's up to be. ". We stay in touch, kinda cool finding other relatives.

A direct cousin on my mother's sisters side has heredity hemochromatosis, mis-diagnosed, and now with no thyroid gland.  She thought the H63d Gene was good, nothing to worry about. . Again so rare, Doctors did not know enough about.

So thank you for reading once again,
And if you have thick blood, or iron overload I would love to hear about this, to add to my registry, so some scientist can look into this.
Join my mailing list, follow my blog!
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

Optic neuritis, Eyes, Healthy vision

I have touched base  quite frequently with Eyes, Vision, the problems associated with Multiple Sclerosis.
many Dr's are part of My eye team. A Optometrist, who prescribed Glasses, but can also look at nerves, and how the eye looks.  A second Dr, a Ophthalmologist, does more detailed, including surgery to remove cataracts. He also looks at the eyes and into the nerves, muscles, and what is happening. The third is my Neurologist.

When Multiple Sclerosis hit me, one of my symptoms was Double Vision. Kinda blurry, but yet I would watch TV, and two of the same characters were there. One about three o'clock position, the other more near a five o'clock position.   My distance vision became off kilter. My Near vision, I kept reading the same line over and over, not able to get to the next sentence.  I did not know at that time Multiple Sclerosis would be part of me. One eye would flutter.

Money was tight, so I went to Dr Costco optometrist. A real knowledgeable optometrist gave me two new prescriptions. One for reading, and one for distance. But he also took the time to scribble some words down, that were concerning, to show my GP.  Alternating exotropia,  Right  lateral Gaze., And a few others I did not understand. He put in some prisms to help correct, but not over correct.

My Eyes would take a path of their own ever since. Lights would effect my eyes, one pupil not responding as fast as the other. Each person has their own story, but a common denominator is the eyes.

My ophthalmologist told me,  I could order a pair of glasses every day, as that was how my vision was changing, due to nerves that control the muscles of the eye.  Optic neuritis.

Costco, goes thru optometrist, and visits with new optometrist were five minutes.  That's when I switched  to the one I have been seeing.

Ones that advertised on TV, or major adds in newspapers, have the worst reputation with the BBB of complaints.

On One of the visits One year, My New optometrist took two hours with me. My eyes,  had what he described as cotton balls at the end of their nerves.  I was missing, or had blind spots. I knew that from walking out dogs, I would be missing, or not seeing items.

Optic Neuritis,  a quite common word with Multiple Sclerosis. Affecting people differently. Some loose entire vision, as my neurologist had told me years before. If I went blind, to get to UC Davis.
This was not that bad I told myself, but I found myself at the local bandage hospital near the small town where we live. The cotton balls were a huge concern for my Neurologist at UC Davis.
She prescribed five days of iv soul medrol. I

 My Eye appointment was Monday, and I started the procedure, as it was the holidays, On Wednesday.  Not wanting my partner to drive five days down and back, the local hospital was given The script from my neurologists.

The local hospital, was like they had never given a iv treatment before. Five days turned into seven, as they took off for weekends. A hour procedure, of a bag of saline, and bottle of Solumedrol with a drip  line going into a computer, and into a vein. Simple, but day one took them four hours.

Behind the curtain, was the colonoscopy room. They wheeled patients from behind me into adjoining curtains that split of some dozen spots. You could hear the Dr dictate his notes.
A gal ran around like her head was chopped off, creating more commotion, then help.

The procedure did get better the following visits, but did it help the eyes, or was it time that helped make them better?

Solumedrol, the steroid most commonly used to treat MS, is a brand name for methylprednisolone. It's quite potent and often used for severe relapses. Typical dosing ranges from 500 to 1000 milligrams a day. ... Solumedrol is administered intravenously in an infusion center or hospital.


I have been on Achtar, a $30,000 drug for MS, injected into the muscle,  A few five day courses of prednisone tablets, to help with MS Symptoms, including the eyes. Avatar for MS

Over the years, I have adjusted to Double vision, but not really. My eyes tire easily. There are blind spots, the retina thickness is always asked about by my neurologist.

A article written by my optometrist I found fascinating.I
https://newgradoptometry.com/prescribing-fish-oil/
https://newgradoptometry.com/prescribing-fish-oil/

Nutrition for the eyes. A few pills that might help.
Lutein is a carotenoid with reported anti-inflammatory properties. A large body of evidence shows that lutein has several beneficial effects, especially on eye health. In particular, lutein is known to improve or even prevent age-related macular disease which is the leading cause of blindness and vision impairment.

My mom told me she remembered years before my MS, that my eyes would bounce and not focus when we visited, but that was way before MS hit me.

Prednisone has its own drawbacks, as a medicine used to treat inflammation, or problems with MS. Side effects, the quality of life needs to outweigh the medicines and effects.

I still have the problems years later. It is part of MS, and how my brain is interpreting the images, aligning them up, and compensating for blind spots, or blurry waves.  I have found naps help.

There may be some genes involved also, so eye health is important.

 does omega 3 help, or luitin? Would love feedback of what works or did not help.I

Thanks for reading
JoeY

Generic drugs or name brand

                     When Medicines Start looking the same, but are they?

A new medicine goes thru vigorous hoops and bounds, and many trials and test with people, healthy or not, before FDA  in the USA allows it to be sold.  They grant the drug company exclusive trademarks for years, to help recoup the cost on research, development, three phases of testing, before it gets a approval to go to market, usually at a high price.

When the trademark runs out, and the manufacturer has made their billions, the drug is opened to the Generic Market.  I believe there is still a year given to the trade name of the original drug.

A Generic, only has to have 75% of the main ingredient that makes the medicine work. They may change a molecule here and there, put different fillers in, and try to make it like the real drug, but add their own twists. Even rules apply that they must act the same, absorb the same, and be like the real drug.

Think of chocolate chip cookies. Many recipes to make home made ones.   store bought are not as good as homemade, even if they follow same recipe, perhaps flour is different, or chocolate chips are different. But they are all called a chocolate chip cookie.

I have experienced many times, being sensitive to how the name brand drug works, and those of Generic type.  Some generics work just fine, but in comparison to the real drug, there may be a difference.

Take Cymbalta, brand name for instance. It's ingredient is Duloxetine.
When the generics came out, the insurance companies played Doctor.  Many generic companies came up.  Each company made their Duloxetine different. Even Cymbalta, came out with their own Duloxetine, which was identical to Cymbalta.

But Problems arose with me. It takes about two weeks with Duloxetine, and then you know something is off. Is it the absorption rate of the generic?, Or another slight change to the formula, or that it's not quite as strong?

I used three or four Duloxetine manufactures, recording side effects, how long they lasted, when they started. I reported them to my pharmacy, my Doctor, The company, and finally to the FDA, that runs a site for just this. They need enough people to complain, until they will do something, as they do not check each manufacturer, or facility.  FDA adverse-reactions

But each of these changes took time, for my body to adjust, or not to.
A Generic brand was finally found that kinda worked, but Cymbalta worked better.  The company recently pulled their product, and re-manufactured it with less ingredients. I could tell immediately, that it was only working for 18 hours, not 24 hours.

I asked my Dr for a increase in dosage to make up for that, but my insurance company, re-wrote the script, and showed I wanted a six month supply, and denied a prescription. My Dr wrote it asked 60 grams to increase to 90 grams, then calculate for 90 day mail order supply.
But insurance company re-wrote it as 60 grams for six months, as their quantity limits, and regulations, Then denied it.

on another generic, the pills were chalky, disintegrating as pharmacist counted them out, and again leaving a chalky mess, when I would sort the pills. A common medicine, Gabbapentin.  It should of been the manufacture in India, that knew of the problem, but shipped it out anyways.

 It should of been the pharmacist From a large drug chain seeing a problem, as many patients using this, and many pharmacist ending up counting this chalky mess.

 But ended up with me, the consumer, who gagged on these chalky pills, letting pharmacist know.  It took me to call the U.S. Importer. He did not have any of the pills. Then for him to call India and obtain some pills, to see the problem I was talking about. The India Manufacturer knew of the problem, just not how to correct manufacturing issue. They were quite apologizing,  but nobody questioned, until I did.

I was switched to another coated generic, that has worked since.

another example, is when you are slammed into a generic. The Pharmacy can make more money, so they switch you from drug A, to a generic, without you or your Dr's permission.

 This has happened a few times, which takes hours with customer care agents on the phone, stating my Dr made the switch.

  Even if you have prior authorization for the year on file, they "forget", making your Dr write a new prescription "Dispense as Written", Name Brand Only.  Some days I am on the phone for hours, along with the Doctors, as they make it vague of what they need.

Back to Generic Medicines. Most seem safe, but realize that the generic is different, and has not needed to go under vigorous trials like the original. It is a recipe, like the chocolate chip cookie, being varied, fewer chips, different chocolate chips, as those have generics types.

Would love feedback of your experience good or bad with different name brand medicines, or their counterparts of many companies making them Generic.

Lyrica (pre-gabalin) just went generic, now eight companies making their own versions.

Thank you for reading and commenting
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/