Numb leg

[doglover49]

I was diagnosed with ET last May, I take an aspirin a day and get a telephone consultation from haematology every six months, my next one due in Dec, for the past few weeks one of my legs is feeling quite numb, with tingling, it is quite uncomfortable and wakes me up through the night, I hav found my GP to be a complete waste of time now regarding any of my symptoms and just getting on with it, does anyone know what this could be? Thanks

[hunter5582]

There are a number of things this could be. It may or may not be related to the MPN. Any new symptom needs to be evaluated and addressed. Causes range from very minor to more significant. It could be related to either vascular or nerve function . You will only know for sure if you have it properly assessed.

Since this may in fct be vascular related, contacting your MPN care team rather than the GP would be a good idea. Hopefully, you are already consulting with a MPN Specialist rather than a regular hematologist.

Hope you get this sorted soon.

[plum27]

I have had numbness and tingling in my feet and legs for several years now. When I first pressed the issue with my GP, blood tests revealed extremely low B12, known to cause nerve damage. Possibly made worse by the frequent phlebotomies I needed when I was taking hydroxyurea. A course of B12 injections brought my blood levels back up but the numbness and tingling persist. You should definitely pursue your symptoms with your GP.

[MCurlygirl]

Do you have or know a cardiologist? I had PAIN in my legs. My cardiologist checked me out, then ordered a vascular ultrasound. My right femoral artery had an 8 inch long cholesterol blockage! I had a high tech bypass ( known as PQ bypass) and everything is great again! Keep looking and asking until you get an answer! (my hematologist, as great as he is, didn't think I had anything going on-just that "usual MPN pain"!")

[ERei]

It would be a good idea to be checked by a neurologist. There could be a restriction (stenosis) in your spine that is impinging on a nerve. An MRI of the spine should be ordered to check on this.

[jmctrek]

I have ET (on aspirin only) also and at random times would have tingling or heaviness feeling in my legs. It comes and goes and I haven’t quite figured out what causes its onset. Generally I find it to be more noticeable on days when I am more sedentary. I’ve asked my MPN specialist about this and she wasn’t too concerned b/c my symptoms are mild and does not affect my activity level or sleep. You may want to ask your hematologist (hopefully MPN specialist) to see if you need to be referred because your symptoms are affecting your sleep.

I used to see my hematologist every 6 months, but chose to decrease the intervals to every 4 months. I find this to be a better balance to help allay my concerns of random symptoms I would get from my ET.

[George1976]

the day I found out I had ET (8.5 years ago) I recall my right foot going into a more intense sleep than ever as I waited for a doctor to see me in the hospital. Since then I tried anagrelide for 2 years, peg for 4 now Hydrea for 2 and was diagnosed with a severe poly neuropathy in my legs 2 years ago, right slightly worse than left making it a bit difficult to walk. After seeing lots of doctors I suspect the meds and the ET itself caused inflammation that has played a major role in this neuropathy. The neurologists and spine surgeons still don’t know what caused it. One neurologist diagnosed me with an immune mediated poly radiculopathy. Most seem baffled like they’ve never seen anything like it. I think some lower lumbar nerve pinching is adding to an inflammatory process. Moral of the story from where I sit is to fight inflammation as much as you would fight the MPN.