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
No comments:
Post a Comment