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Severe neuropathy
I have myeloma diagnosed Oct 22. Had stem cell transplant on my 70th birthday in April 23.Now in remission which I'm grateful for and all levels are as they should be. My question is after 2 weeks I woke up unable to move arms, hands and legs. Last week saw an neurologist who says I have severe neuropathy, he has no idea why. Has anybody experienced this I would love to hear what their outcome was.Must say can now walk with a walker and hands and finger's movable, also I get shooting pains which feel like electric shocks.
Best Answer
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Have you tried a tens machine? It's supposedly often helpful. I take pregabalin for mine and it helps. 75mg a day.
Best,
Helen
Answers
HI Lola,
My name is Dan Yeates and I am one of the Online Community Champions here at Anthony Nolan. I also had my SCT on my birthday, although mine was back in 2020!!
So sorry to hear about your neuropathy following your SCT - I personally have only minor neuropathy, but I have seen others that have had it bad as well. Thank you for sharing and having the courage to ask the question - I am sure you will find someone here who will have some experience of this too.
In the meantime, if you wish to talk to someone then please feel free to call the Patient Services team on 0303 303 0303 (9am-5pm Monday to Friday) and they can talk it through with you.
I am really glad to hear that the symptoms have improved even slightly, and the best advice I can give is to follow all the guidance from the medical team and keep up the positive mental attitude that you seem to have, because that will help!!
Dan
Thanks Dan, so glad to know I'm not the only one, my neurologist worried me by saying that I was a rare case.
Thanks Helen. Yes have tried a tens machine it's gave short relief and I'm only the same meds 100mg 3 time's a day plus duloxitine 60mg and co-codamal to help with the pain, and doing lot's of excercises. I have hope I can even dress my lower half without help so having improvement monthly.
From what I've read movement and massage are useful. Maybe you can give yourself a sort of massage. Blood circulation is the key.
Love
Helen