A perfect title. Ever Changing Multiple Sclerosis. It is still a very big part of how MS has changed me. I try to be proactive in My approach, learning about the disease, asking universities, and researching a lot of articles, and papers written by the experts.
My Neurologist told me all the fatigue was MS, has nothing to to do with being in a iron overload state.. Since doing phlebotomy since October 1st of last year, the Cancer Blood Dr. Has had to rely on Hemoglobin numbers, as ferritin numbers showed so different, as if I was good to go after the second phlebotomy. The Iron Ratios were still so far off due to the H63d Mutation of the HFE gene. Hemoglobin was the only way to check. He wanted to get me to a number 10-12, ferritin >05%. Which would be just Anemic. Being anemic would throw me In a stage of the fatigue caused by being Anemic. My numbers went down but the MS fatigue never went away.
In the meantime, the Cancer Blood Dr. set me up with a Gene Counsellor. My GI DR. went and set me up with a liver Dr, due to metabolic syndrome going on. This was to ensure how much Iron my liver had absorbed by uptake from the small intestines. I am in between seeing my Neurologist, but keeping them in the loop. I keep my GO in the loop monthly talking with him.
Not All Doctors are the same. It was a roller coaster day for me and my partner Wil.
The week before I was undiagnosed with ulcerate colitis. That was good. I was led to believe I had this for two years. VSL#3, prescription strength was used during this time, a mega high dose pro biotic. I never had The symptoms explained. My New GI Dr explained this to me.
The Gene Doctor, said I could not have Iron overload, as she scratched some items on paper, showing the feedback loop. I had brought a pamphlet with me, my mom helped put together from Alaska. This was a entire genealogy of relatives, going back generations, and forward to the current generation. Also included was a notebook of any known family diseases, or how a person died, or those living. What was still being worked on was DNA, I let her know.
Everyone has taken a 23and me a test,but not all results were available, which included mine. I am sure she had access to doctors notes, that showed he mutations., and lab notes of the H63d gene causing the problem in me, but disregarded them, perhaps undiagnosed me, with her notes, before even seeing me. She was saying hemoglobin just ran in my family. This I checked and emailed to her, after her appointment, showing everyone was normal. Not sure what she thinks, or I should follow up with her.
Illustration to show the structure of the DNA double helix.
Image credit: Genome Research Limited.Unravelling-the-double-helixA interesting article, H63d info, shows the H63d Gene, and since I have two copies mutated, Iron Overload. This gene is also known as
rs1799945
My GI sent me to A liver Dr for metabolic syndrome going on. Perhaps the uptake of iron in the intestines, and stored in organs. His assistant had more yearn for knowledge. He said, perhaps some blood test, so they could check iron uptake into the liver.
It was then, the liver Dr entered the room. Said no way could I have this. I did phlebotomy for nothing, for no reason, undiagnosed me, said he would write notes to all my Dr's, who were wrong. Said I was fine, and left, no follow up needed. I was sitting their with my jaw half open, Wil the unmistakable look of what he just did.
This led me to email my cancer center blood Dr, who ensured me two mutations of the HFE gene were happening, causing Iron overload, as we discussed.
I spent the rest of the day emailing my cancer center doctors Dr's notes to everyone, and then poof!!!! Liver Dr's notes disappeared, like I never saw him.
Our 25 year old car took a beating, needing many parts, and maintenance for the weekly phlebotomy, and blood test, as Sacramento trips are hard on a old car. Department of health care service DHCS was supposed to supply transportation during this time, but would not until I sent notes to legal services of northern California, Lsnc.net and Governor Brown, that they had not since 2013 when asking everyone in the county, and organizations for help.
So not all Drs are created equal, or want to have the knowledge of if they are wrong, or do not know, to come out and say so. A email from either of these two Doctors, would of put some faith back into them.
This led me to a YouTube video I made on the way to a doctor. caution, Many turns ahead
Danger road curves ahead
Thanks for reading
JoeY
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