Hi I have been diagnosed with Mononeuritis multiplex does anyone else have this?

Its a Peripheral neuropathy, vasculitis of the peripheal nervous system, from what I understand the blood supply to my nerves is cut off due to swelling of the blood vessals, once the blood supply is stopped the nerve dies off causing paralysis this has affected mainly my arms, hands but also my legs and chest, has anyone else got this condition? I feel very much alone with it.

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  • Hi,

    There are over 18 different variants of Vasculitis and many of them can cause peripheral neuropathy unfortunately. I am sure there are many in this group with similar symptoms and hopefully they will comment and share their experiences.

    Are you receiving treatment that's making a difference to your symptoms?

  • Hi

    I had this in 2010. Diagnosed as a symptom of MPA a form of vasculitis. It affected both feet and my left arm but with treatment for the vasculitis, has recovered.

    I believe the nerves grow new pathways. It did take a year or so to get back to usable from completely numb and I still have funny feelings in them but as I say, I can use them again which is really good.

    I did fear they would never get better but with exercise and by trying to use them they very gradually improved. Nerve growth is very slow.

    Don't give up just yet if you are newly diagnosed, it is scary but there is hope.

    It is probably different for everyone but I do know a few people who are mobile again, so good luck.

    Lynne

  • Hi there - yep, I do!

    When I was first poorly I was left with paralysis in my hands and index fingers (which meant I constantly looked like I was pointing at people and couldn't play Playstation!)

    After some time I was able to move my fingers again but unfortunately the nerves have never regrown and so I have lack of feeling in my hands and feet. This has meant that I have had to learn to use my hands again (including learning to write again) and deal with this but it's made me realise how much a cherish my hands and feet!

    If I can help in any way please let me know x

  • Hi Sarah, I had the same problem with my index fingers, I am also left handed and that hand has been affected more, so I have had to learn to shave, clean teeth, using a mouse with my right hand. I have looked at your past post and it looks like you have had the same sort of treatment as me, but I am two years seven months since the attack, It would be great if I could talk to you,and exchange experiences, not sure how to go about it but this is my email address speercool@ntlworld.com thanks Steve

  • Hi there...I also had this as one of the symptoms of my GPA vasculitis. At first, it was numbness in my feet...then it spread to my hands. Then I was diagnosed. By that time, I couldn't walk. Over the subsequent year, once I had treatment underway, i started to improve. But it was slow...I was in physiotherapy for more than 6 months, learning to walk again etc. That was 2.5 years ago....now, I am almost fully back to normal. My balance is still a little off and I didn't fully get all feeling back in my feet, but close and now I barely notice. I can bike, walk normally, even jog....just too wobbly on high heeled shoes! So try to be patient and try to look for a physiotherapist that deals with neurological issues. Don't lose hope...some days were difficult but they got easier and working on my exercises, I think, really helped. I am here if you need anything or want to talk.

  • Yes, my diagnosis is mononeuritis multiplex secondary to vasculitis confirmed by biopsy and previous medical history of nose bleeds, sinus issues and rashes. It took eight months to get the diagnosis with every blood test, scan etc possible. I have now been on mycophenolate mofetil -mmf for 22 months and the feeling on my left side has returned. I think that the next step is to wean me off if mmf gradually. Good luck

  • Thank you all for your comments, I have had a lot of treatment its been 2.5 years now, inc chemo a nerve biopsy high dose steroids, inc intravenous steroids, and I am also on mycophenolate 2000mg a day, my condition is slowly improving,as I have a mindset that I wont be beaten,I have chronic fatigue not sure whether its down to my medication but exercise every day athough I never feel like doing it, it seems like every one is unique in there symptoms.

  • Hi There,

    I have this mononeuritis multiplex neuropathy affecting both legs, the left worse than the right, as a result of EGPA/Churg-Strauss Syndrome. I had some tingling affecting fingers in both hands, but that has improved-gone away. Unfortunately the legs and feet remain in poor shape, swollen, painful and achy, pretty weak, semi-numb and tingly. I feel I am much better off than many people here that I read about. I can walk and move around at least, regardless of pain, and with PT, it has been helping me regain mobility, flexibility and some balance. It has been 4 months since diagnosis, been in treatment since, Prenisone tapering down to 20mg and azathioprine so far. I'm dismayed to hear you still experience neuropathy after years of treatment, though I have been becoming used to this idea, that it will not get better in weeks or months, it will most likely take years, if it will improve at all.

    But, it seems you are not quite alone, and neither am I, so I hope we can both stay strong for the journey.

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