PV: abnormal sensation in feet

[sbs_patient]

I was diagnosed with PV in 2015. After about a year, I noticed some loss of sensation (paresthesia) in some of my left toes. Neurological investigation found nothing. It's been with me ever since, slowly spreading to all toes and now to the other foot. My Johns Hopkins hematologist (unfortunately no longer there) thought it might be caused by micro-clots in capillaries. Has anyone else experienced this?

[Aime]

Hi, I have too many red blood cells but double negative to the jak2’s! I have quite a lot of tingling/numbness/stabbing pains in my toes but put it down to osteoarthritis, which I’m riddled with. So that’s an interesting alternative! Hope you get it sorted soon and someone else on the forum can shed more light on the issues. Kindest regards Aime x😻😻

[Uzza]

Hi...I have the Dx of Jak2 ET and yes, I have! Not all the hematologists, seem to be up with this symptom. Although, through the advice of other sufferers, I pushed to be treated with Duloxetine:

"Duloxetine is used in the treatment of depression, anxiety disorder, diabetic nerve pain, fibromyalgia (a condition in which there are generalized pain and tenderness in the body), neuropathic pain, and stress urinary incontinence. May Treat: Depression · Anxiety disorder · Diabetic nerve pain · Fibromyalgia · Neuropathic pain · Stress urinary incontinence. Drug Class: Serotonin-norepinephrine reuptake inhibitors (SNRIs) (Naphthalene Derivative)..."

I have found this drug has greatly improved my peripheral symptoms. The discomfort has gone but I do feel there has been nerve damage.

Cheers

Uz

[Canbrit]

My husband has had PV jak2 confirmed since January 2011. He is 57 years old. He has found that drinking lots of water daily and taking 250 mg b3 (a vasodilator) has eliminated those pains. He believes that the pain was caused by a restriction in blood flow to the capillaries and has been helped by the dilation from the B3 and from being well hydrated. Hope this helps. All the best. Liz

[havashan]

I have ET. My most troubling symptom was numbness and tingling and a heavy feeling in my arms and legs when my platelets were over 700. I had neurological exam which ruled out that problem. My Hematologist, Dr. Braunstein, who I assume you have been seeing thought it was an MPN symptom. After I started taking Pegasys and my platelets came down those symptoms disappeared. Have you found a new hematologist? I went to see Dr. Ellen Ritchie at Weill Cornell in NY. Its a longer trip for me (I live outside of DC).

[sbs_patient]

Thanks for your reply. Yes, Dr. Braunstein told me the same thing. I'm currently scheduled to se Dr. Peslak at UPenn next month. However, he's only a peripheral member of UPenn's MPN group. If I'm not satisfied with what I hear at this visit, I'll try to move to one of the core members. Thanks for the suggestion about Dr. Ritchie at Cornell. That would be about 250 miles for me (I live in State College PA), not to speak of the inconveniences associated with a trip to NYC.

[hunter5582]

I have experienced something similar. Erythromelalgia-like pain in the toes/feet. Slight swelling and tingling/burning pain. I had been taken off aspirin. The symptom stopped immediately when I resumed the aspirin. Dr. Braunstein told me this is a classic PV symptom. It is indeed a microvascular issue, cause by abnormal interaction between blood cells and the vascular endothelium.

Hope you find relief soon. A new MPN Specialist too. Apparently all three of the leading MPN Specialists at JH have either left or are leaving. I am trying a new doc who may work out even though she is a MF/SCT doc. We will see, I may end up transferring my MPN Consult to Weill-Cornell or elsewhere.

[sbs_patient in reply to hunter5582]

Good luck with your search for a new specialist. If the doctors at UPenn aren't satisfactory, I will also have to look elsewhere.

[hunter5582]

Thanks. Do let us know how the docs at UPenn work out.

[souplover]

I have PV and also have the problem of numbness in my feet. Doctors haven't been able to find a neurological reason.