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