I guess this should be another post on how my MS is progressing.
I came back with my labs showing Thick Blood again, June 2021. This hasn't happened since my last phlebotomy, in 2018-2019, and then I stayed iron deficient and low ferritin for two plus years. Kinda anemic. But concern from my Endocrinologist got me emailing every Doctor.
There was no iron or ferritin left to do any phlebotomy. My Hematocrit and hemoglobin was high. This means large blood cells carrying oxygen to organs. I obtain blood test every three months, so doctors can catch items. My next one now being end of November 2021.
I still stay quite overly fatiged, have spouts of double vision. I walk with a cane, my legs, thighs full of Botox, along with the back of neck and right shoulder muscle. Botox last for 52 days, but USA government decided it can only be injected every 90 days. I am on some twenty plus medicines for MS. My travel bag of medicine is larger than my pack of clothes.
The Thick blood, This was a major concern. I am on testosterone therapy, which is always thrown as the culprit, but had been decreased from 2.0 to 0.4 since before the phlebotomies. The cancer Dr saying this was the culprit, but endocrinologist saying it was not. I confirmed this with her in 2016, by stopping testosterone therapy cold turkey (would not recommend this to anybody). This was done so she could do a MRI of pitulary gland.
My Hematocrit and hemoglobin kept rising, I had to show her, so testosterone was not a reason to raise it, as I had stopped testosterone, and restarted at 0.5ml injection.
In 2018 Iwas then sent to the Cancer Center, Where they found Jak2 negative, but further DNA, showed two copies of the H63D gene. Less than 5% will overload with iron. I went thru 17 phlebotomy, or vein punctures, once a week from Sept 2018 to Jan 2019 to lower Iron I had.
Tryglicerdimia Hypertriglyceridemia-Cause-and-Symptoms.aspx. was also present. A drug fenofibrate was used. This drug spiked my creatine (kidney function) it came back to a normal for me once stopping this drug. I am one of 5% allergic to this. So now on Vascepa.
This lowered my iron overload, and no maintenance phlebotomy were needed since being low. which they found weird, but monitored me. left me anemic, or iron deficient and ferritin staying low.
Before the test 2021 test, I did another experiment. I had tried eating a lb of liver, but no change in my iron in June 2021. During my next three month test, I stopped turmeric curcumin for a month, and ate extra red meat, perhaps 1/4 lb of liver and onions.
My next blood test came back, September 2021. ferritin in range, but Iron High. I restarted curcumin and turmeric. That is a secret to stopping iron overload.
But my hemoglobin and Hematocrit was high.
Still thick blood. Not enough items for a phlebotomy, However I was referred to the Plumagology lab when I got the results of thick blood.
The first phlebotomist test done was a breathing while inside a phone booth looking contraption, into tubes, like blowing out birthday candles, holding your breath, and then repeating this with a inhaler medicine. The tech mentioned muscular problems. He showed me the graph which showed the diminished volume I was at. Just opposite of copd.
You tube technical video of what test they are doing.
I get a 8000 ft simulated altitude test in November 2021. These videos explain more. Some may be technical, but just the understanding of pictures he draws are worth watching. All these have to deal with MS. I think I am part of a study group, with PPMS, that they are looking at breathing, chest walls, which are muscles.
A more precise blog will be written once going thru the above test, and how they are related to multiple sclerosis.
In some other pre written blogs, I explain the blood cancer, and then a video o blood to understand how it is made. A specific video will show where the H63D mutated gene is at. More blogs, not in any order to show high and low blood pressure.
Enough info for now
Thanks for reading.
Joey
