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JAK2 Mutation - Effects and Questions
Blood Cancers & Disorders | Last Active: Jan 23 5:55pm | Replies (339)Comment receiving replies
@roughanne Hello. Well, we have diverticulitis in common as well as the RLS and the PV. After a colonoscopy years ago, the MD told me not even a polyp but I had diverticulitis. I asked him what to do and he said “Eat more fiber.” Subsequently, I never have had any conversation with any MD about it. I’ve always eaten a lot of fiber, and still try to.
The legs I’ve self diagnosed based on what I’ve read and I believe it is one of the results of taking HU as is the exhaustion.
I have a tendency, at my age more so, to consider my overall well being (you know, being alive and mostly well😂).
Once I got past the fear of the PV diagnosis and realized it could be managed, I felt better.
Aside from my hematologist, the Physiatrists I’ve seen at Mayo, have helped me the most. I had never before heard of this specialty. They specialize in Physical medicine and rehab, treating non-surgical conditions affecting muscles, nerves, bones and joints. In plain language I think they treat the “piece” of medicine an old fashioned GP treated by listening to all your complaints and treating what can’t be fixed with surgery. Maybe find a good one in your area? I think that would be a good place to begin. And, I think PT is part of the answer.
I hope this helps and please stay positive and keep posting.
Replies to "@roughanne Hello. Well, we have diverticulitis in common as well as the RLS and the PV...."
@christina3444 thanks Christina it’s nice to know we’re not alone in trying to figure this out, I’m definitely interested in the holistic approach where somebody will join the dots and give helpful solutions, you seem to have much more access to a big range of services not so much here in Ireland but in saying that the Mayo clinic is very informative, it’s a good age to have health problems as we have so much access to information on the internet. I too have managed my diverticulitis with plenty of fibre , I use a product called inulin it’s a chicory root fibre and a probiotic and come in a powder form that you sprinkle on cereal or add to fruit juice and the good thing I like about it is that you don’t get bloated on it as I did with fibrogel , I get most of my supplements on IHERB and they deliver very quickly , just another question, I’ve to have a bone marrow biopsy next Thursday 11th and am feeling very anxious about it did you at any stage have one and how did it go?
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@christina3444
Just saw this and was surprised to see your mention of diverticulitis .. I too, was admitted to the hospital for intravenous treatment for it since they saw infection on CT
Only one time
I have PV with Jak 2
Discovered when I had a
stroke and two DVT’s in 2018. Had just two phlebotomies, the just
Hydroxyurea and Eliquis since. Counts are good
Best wishes to you