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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jan 23 5:55pm | Replies (339)

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@roughanne Yes, that neuropathy is a “b—-h”! I take one Magnesium 400 mg capsule a day and recently changed to taking it in the evening. That seems to help with the foot/leg problems at night.
The exhaustion is probably what I have complained of most but it comes and goes, at least for me. So, I make the most of my bursts of energy and when I get tired I stop and rest. I try not to nap during the day because that affects how well I sleep. But, rest!
And, I too have a bad back. Exercise, damn it😝helps. Get some PT. I have taken Tramadol when I needed it (rarely). I woukd ask your hematologist and your pharmacist about that med (Im unfamiliar with it).
As far as alcohol, I use wine in my cooking but just don’t have much taste for drinking anymore. I do have one Vodka Gimlet for my birthday (old habits die hard) and so far no ill effects. But, I would ask your hematologist.
I’ve been on this journey for about five years. There are worse things!

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Replies to "@roughanne Yes, that neuropathy is a “b—-h”! I take one Magnesium 400 mg capsule a day..."

@christina3444 thanks Christina it’s great to connect with others with similar problems, and now I have another-problem I would like help with ,I’ve now been told that the problems with my legs ,burning tingling and sensations at night which I’ve had for the last three years is restless legs syndrome and now don’t know where it fits in with the PV diagnosis and what if any medications I can take to help as I’m worn out with lack of sleep 😴 between having diverticulitis (managed) kidney stones, very large gallstone (on surgical list to have removed)NAFL arthritis in my back , the PV and now restless legs I’d love to know if anyone has multiple health problems like mine and how they manage and instead of attending different specialists (costing me a fortune) if there is any one type of doctor who could deal with everything and put a plan in place , all answers gratefully received