Nerve damage

[Schmags]

Hi i was diagnosed with EGPA last year ive been left with severe failure and i am now having to have a s-icd fitted and nerve damage on my left leg and foot,I'm just wondering if anyone has had this disease and had nerve damage and if so have your nerves got better or have you been left with permanent damage, thank you

[citygirl1234]

Hi Schmags,

Sounds like you’ve had a rough year, but glad you have found Vasculitis UK. It’s a very useful resource.

In answer to your question:

I have some nerve damage believed to be caused by my ANCA vasculitis. My vasculitis specialist told me that treatment for vasculitic neuropathy focuses on treating the underlying cause (I.e. if we can get on top of the vasculitis, we can stop it getting worse). The nerves can sometimes get better once the vasculitis is controlled but it is unlikely the nerve damage can be completely repaired (especially if the damage is extensive), so at least some damage will be permanent. My vasculitis is not quite under control yet - it’s still “rumbling” but it will hopefully get there soon. (It can take a while to sort it out). In my case, they think the nerve damage is likely to be permanent.

If you haven’t already, I’d suggest you ask your vasculitis specialist next time you speak to them and consider asking for a referral to a neurologist (ideally one your vasculitis specialist recommends). They should be able to tell you what can be done to help you, and whether the damage is likely to be permanent in your case.

There is also a study at the moment looking at neuropathy in people with vasculitis specifically, which you might want to participate in. vasculitis.org.uk/news/rese... < This page has more details

[Will-ow]

Hello, I too have nerve damage (mononeuritis multiplex) with EGPA so I can empathise with you. The damage effects my left arm, hand (thumb predominately) and left lower leg and foot. Also my right side but to a lesser extent. I see a consultant neurologist who originally advised it takes 2 years for nerve damage to repair. I have passed this by one month and unfortunately I haven’t recovered. Everyone is different so I wish you a different outcome.

[Schmags in reply to Will-ow]

Thank you will-ow,sorry to hear outcome,im hoping to get that feeling back and keep thinking positively and take each day as it comes with good days and bad days

[Chipper03]

Hi Schmags I was diagnosed with EGPA in 2009. The nerve damage in both my lower legs and feet was of my sensory nerves, and stopped getting worse as soon as treatment started. Before treatment the pain was so severe I couldn’t stand or walk. I had a neurological evaluation of the nerves about 6 months after diagnosis, which showed no damage to the motor nerves which was positive, but that the sensory nerves would recover only very slowly and probably never fully.

12 years later and my lower legs and feet continue to be fuzzy overall and in patches feel like I’m walking on pebbles, but it’s strange how one adapts and I can’t really remember how they felt before the neuropathy! Sometimes a bit irritating but Ok without painkillers. I believe the nerves are very slowly improving, but it’s in tiny steps quite hard to tell. I lead a fairly active life, with some adjustments for fatigue. Wishing you all the very best in your treatment and recovery.

[Paprika60]

Hi, I have had triple factors, massive vasculitis attack (urticarial vasculitis) that left both legs and feet with severe neuropathy, a stroke on my brainstem that left my entire left side numb severely seven years ago and then one episode of shingles on my left thigh which I didn't even feel when it came on due to the previous two factors. When stroke occurred, I was told by my neurologist that I would never recover as brainstem stroke is not known for recovery. But I refuse to believe these verdicts. Over the years I have done numerous things starting with acupuncture accompanied by daily self massages (morning and evening with my own essential oil mixture for damaged nerves) and now I have been using self acupressure (with a help from books on meridian points). I have also used circulation boosting machine (electric stimulation). They have all helped and my legs are almost 90% better and only my toes tingle constantly but when I massage the toes, the sensation returns so I am keeping up with this regime. The improvement is slow but it really does work. I am with my body 24/7 so I feel I have to help myself. I was at one point prescribed some medication by my neurologist because the pain was quite bad but I didn't take them when I read the side effects. So my suggestion is massaging with essential oil which will boost blood circulation. It is work but I think very worthwhile! No pain, no gain. Best of luck to you and hope you recover.

[Schmags in reply to Paprika60]

Thank you Paprika60 for the reply,good luck on your recovery,hope all goes well

[bev0113]

My husband was diagnosed with EGPA in 2017 and has nerve damage to his left leg from below the knee down. Total paralysis. He also had drop foot, which has come back with therapy. Not much has changed with his leg since his diagnosis. Good Luck! I wish you the best.

[Schmags in reply to bev0113]

Thank you bev0113,I'm sorry to hear about your husband and hope he gets better soon

[Katie18]

Hi Schmags I have churg Strauss syndrome like you and suffered severe foot drop and nerve damage in my lower legs and feet. I was told by consultants it was unlikely that they would improve- but they did. It took about a year to see any improvement. I had lots of reflexology. The nerves are not perfect - I suffer from numbness in patches and my feet are sensitive and can get sore by the end of the day. But I can walk again and regularly do exercise classes so it was a good outcome. Best of luck