Neurodegenerative Diseases

Recently, My Neurologist was doing  injections of Botox into both calves, and the neck muscle for spascity.  the muscles remaining in a Charlie horse state. Botox works for 62 days, but can only be given every 90 days

He has mentioned the large blood cells, or thick blood vessels I had since day one.  I was now able to tell him what genes were involved that created the Iron Overload. A possibility of the pituitary gland storing iron, as Testosterone and vitamin D shot up at the beginning of phlebotomy.

  I have a great Endocrinologist form University of California, Davis that keeps a good track of me. She is the one responsible for getting me to the Cancer Doctor, when my blood was not normal. She had done  a MRI of the pituitary gland, after ruling every endocrine items out.
 At that point I knew she was looking for a tumor. This came back normal. The Endocrine system was having trouble though.


My main neurologist,
He asked about other Genes involved, if I had The A004 gene. This is Alzheimer Gene, which was also passed down. My Moms dad died of this.  He agreed to review my DNA on our next visit. Iron is also involved in studies they have done. So a double whammy, but doesn't mean I will get late stage Alzheimer's.  I will bring him the DNA  that was this gene was passed to each child,  so a interesting reading. More research to keep my mind active.

A few other Genes listed, but 23Andme does not show you all. It's in the raw data, that would need uploaded to another site to tell you what the gene coding means. Blue eyes, or brown hair, or a bunch of diseases you may be susceptible to.  Still looking at sites, still trying to get my mind boggles down with information of this new DNA technology

These gene sites, including 23andme, can also tell you your ancestry. I have a ton of people related to, never knew about. Letting my sister and mom do genealogy of this new found information.

Multiple Sclerosis is a neurodegenerative diseases, along with hematomochrosis or iron overload,
Macular degeneration, celiac disease,  and a whole slew of others.

My Team, is made up of a  GP, DO, (Dr of Oseopathic medicine, who looks at the entire body as a whole) two Neurologist, Endocrinologist, GI Dr,  A heart Dr from Sacramento Heart, a ophthalmologist, a optometrist, hemotologist, Cancer Dr,  gene counselor, and their team of nurses, students, and researchers I utilize.

  they are keeping track of me, and the interactions of new symptoms.  I get my follow up visit in a few weeks, where I bring my notebook with me full of questions, or possible therapies for my main MS Dr.

All The other neurodegenerative diseases just pile On top of my Multiple Sclerosis.

My main Neurologists asked questions, and then  scheduled Me for a Lsep Test This last visit.

This is a test, they put electrodes on many parts of your head and your bottom legs. Many electrode sites hooked to a graph machine,  different electrical currents and pulses are then sent up the leg and back down to measure the nerves, speed and a lot of other technical items, from different parts of the brain.  The Neurologists keeps track of my MS, with these test done every so often.


MS took a turn this last two months. Stabbing knives alternating between the top of the feet down thru. Only happens at nighttime. My GP last month, told me my body was getting used to the drugs, and wearing off.  I went back thru my notebook, and assume I have found the culprit drug not working.  When cymbalta was changed to a generic, it only has to be 70% of original strength.  I used many generics that did not work, including naming generic brand for not working.

This I think happened again. With same drug, a generic of Cymbalta, wearing off in 18-20 hours, instead of being 24 hours. I did my own study, as cymbalta, or generic takes a few weeks to kick in, I had enough of brand x for two weeks,  so I used brand Y, For first two weeks with extreme pain awakening me around 3-4 am. This was followed brand x for two weeks, without problem. I then followed it with brand Y again, being awoken with jabbing pain in foot about the same time. Since mail order pharmacy, they just send what Aetna Coventry has bought the cheapest of, I do not have a say.  But with a half dozen tried, think name brand may need to be medically necessary, if I receive this sub brand again. But Need to let people who make it know,

I feel privileged to have access to two Neurologist. One Neurologist, perhaps in his 70s, his dad was a Neurologist also. He keeps up to date with what has worked, and what has not over the years. A very sharp minded guy, who has me even try concoctions I have made to obtain 27 mg of  quinine that stops the Charlie horses when botox wears off. A tablespoon of Yellow mustard
Also helps. No Dr's can explain this one.

He injects botox into my calves that stay in a continuous Charlie horse, until botox is used. Also this botox is injected into my neck muscles, where knots of muscles form. This is called  Botulism Toxin A, so different than one used for wrinkles.

I bring My notebook into his office three weeks later to go over research I have done, the yey, or no, or that was tried in 1960, or get him more info. His office is always full of paperwork, as he does not use a computer. A staff of three, that writes the schedule in a book, the other, a old computer for billing.

My other Neurologist is a lady from the University of California, Davis. She also keeps up on latest items, and research.  She is in charge of some researches going on,  but I can only see her every six months. Some visits are short of she is running behind, or longer if I am in need of time with her. She examines my reflexes, strength, walking speed, and types lots of notes of last six months. There may be a trial she will be involved in.


My other team consist of

 Ubiome.com, who does a Gut study of microbes in me. I was one of the first on their pilot study. They have came a long ways since then.  I share the results with my go and GI Dr.

 23andme.com who just did my DNA, along with the Cancer Center doing DNA also.

Iconqurems.com let's researchers look at your labs and questions.

Patientslikeme.com keeps a great record of medicines, started, stopped, adjusted, graphs on me and pain levels. Has all my labs in one place with graphs of levels. Has my DNA, and blood samples.

Allofus.com recruited 1 million people for testing with scientist to develop precision medicine. I was one of the first few thousand who joined. They are looking into my DNA, and keep me informed of their scientists and Test going on.  Perhaps future generations will be helped.

Managemypain pro is a great app I've used to see what medicine affected me, or where I was having more pain at.

I ask other well known bloggers also, to get their perspective. I always look forward to their emails.

Thanks for reading
JoeY

Also, if anyone wants to walk or virtual walk around the capital of California for MS, My team name is everchangingMS
Everchangingms Sacramento MS Walk or Virtual Walk

Rare diseases

Multiple sclerosis is listed with Rare Diseases.
Both Wil and I had The opportunity to go to the Rare Diseases Convention held this last Saturday, in Sacramento CA 2019. rearediseases.org

They had it set up for 75-100 people, but I felt more connected to the small group of sixteen that showed.   Wil and I, the only guys.  I could not keep up with the disease names or short names the people had, or a loved one, like their child died from.  names of diseases never heard of and years to get diagnosed properly.   This conference covered rare diseases and the orphan diseases, which is a disease that has less than 200,000 people that have the disease.  So my rare rare H63d gene that I received from each parent, that was mutated, perhaps a hundred years ago,  is quite rare with me, and my older brother, and one other in 10 years I found. Would love to hear from anybody with both H63d genes that caused Iron overload, for paper to submit to researchgate.net, so other researchers can look at.

I have been in iron overload, with phlebotomy every week since October. I became anemic since January, and numbers not coming back quickly, as my bone marrow makes new blood cells.
My brother, did not know he also is in iron overload. It shows up as high ferritin with him, and bronze skin color.   Bout in the big toe is a sign of iron overload often overlooked.   high hemoglobin and iron saturation with me. Two genes, part of HFE, identical H63d DNA which causes the protien that turns on or off the uptake of iron to the body not working properly.


Rare Diseases had a nice breakfast and lunch spread  set up for us.
The presenters knew their materials and answers to questions asked.

There were some sniffles, and the lady who sat next to me, using mega Vicks vapor rub, so I hope the zinc I Take will head off any of the people that have been coughing or have a cough is not contagious. I can not take vitamin C, because it attracts iron. Fortified cereal, and a lot more items contain iron, or extra C, that I can not tske.

I was glad the conference wrapped up by two, as my body was becoming stiff, and MS symptoms not settling down.  We were quite tired by the time we got home to Wil s Mom, who made home made lasagna for dinner, which we enjoyed after she came home from church.

Our dogs got their walk before rain hit, and we're glad we were home. A night in Sacramento was spent before the meeting, sponsored by rare diseases, as the distance was far for Wil to drive.


I forgot to mention their new site https://rareaction.org/resources-for-advocates/

Thanks for reading
Joe