Nerve damage. .........

[Mags88]

Hi all. I have vasculitis which seems to be contained to my nerves. Iv lost the feeling and some movement in my left habd and lost the feeling in half my left leg and foot. It all started with nerve pain in my left hand and wrist about a year or so ago. Now on cyclophosphamide, had 2 so far and have my next at the end of the month. Well the last few days the nerve pain has started again in my index finger on my left hand but now it is also in my right index finger and right foot. Im so scared it is going to happen to my right side. If it does I will not be able to write, possibility not type on a computer and on and on. Im guessing because im on cyclo there is nothing I can do. Is there any point in contacting my neurologist when I see him in 2 weeks when I have next cyclo. Sorry for the very long post.X

[chrissy60]

Hi Maggs, I dont really know how to reply to this with info but just wanted to tell you that my Mum has severe nerve pain in her fingers from when she was diagnosed with vasculitis and it is steadily getting worse. She has not been to see anyone since she has been discharged from hospital in July and I am now thinking reading various comments on this site that i shall have to ring my GP to enquire. You should always speak to your specialist whenever you can about any worries x

[Mags88]

Hi chrissy.

Thanks for replying.

Your mum should really follow the nerve pain up. Mine was dismissed as carpal tunnel October last year and I lost all sensation within a few months. I was sent to my local hospital for nerve conduction studies and then recieved a letter to say I was being sent to the london royal free for fufurther investigation so that was when I knew it wasnt carpal tunnel.

My nerve pain is on and off and it doesnt cause me to much pain thankfully. I remeber last year wakeing in the night and I thought I was going to have to call 999 because the pain in my leg was unbelievable. Iv never felt pain like it. Would happily give birth again then have that pain. X

[Doghouse]

If I was you I would voice my concerns with my specialist nurse or consultant . When I had my cyclo infusion I got to the 9th and started with a slight pain on my left side and when I took deep breaths. I was sent for a chest X-ray and I was then told the cyclo hadn't worked . My nurse told me if I had any concerns get it checked as I would waste so much energy stressing about it which could make it worse and secondly save the energy for something you enjoy doing .

[Tony-LakeDistrict]

Don`t wait ,it could be one or more of many things, necrosis caused by pred if you have been prescribed it, induced diabetes, even gout, all very treatable. Whatever it is your consultant will know who to send you to.

Always tell your specialist everything. Mine told me " that even what seems insignificant can tell a tale",

Hope your xmas will be pain free

Tony

[Ulysses31]

Hi

I had the same problems and I was diagnosed with Mononeuritis Multiplex.

The pain I had was like someone had stuck a solder iron or red hot knife into my leg it was excruciating, I was sent to a neurologist for tests and that's when I was told I had Mononeuritis.

I have since been prescribed Pregabalin to help combat the pain caused by the nerves 'dying' but there are still some days when even that fails to work.

Best bet is to get yourself seen to asap.

[Mags88]

Thank you everyone. I will call my neurologist tomorrow. Also off to the GP because I think I have another sinus infection.

Mononeuritis multiplex...... pretty sure this was on the suspected diegnosis for me. X

[02061949]

It never hurts to make a neurologist work for his money. Checking yet again will not hurt. It must be better than doing nothing. My daughter has nerve damage that causes pain in her feet and legs. I worry about her too. So get onto your specialist and see what he has to say. The worst he can do is do nothing.

[Hidden]

If the symptoms are worsening and if the cyclophosmamide doesn't appear to be having any impact on the disease in 3 or 4 months then I suggest you ask your consultant to switch to an alternative treatment. e.g. Rituximab. Please always get in touch with your specialist if you have any adverse changes or doubts. If you aren't having your needs met then change your consultant. There are many very knowledgeable and willing vasculitis specialists around the country and a number of exemplary specialist clinics. Health wishes.

[lillylangtree]

If this isn't working for you,I also recommend you see a different provider. I lost the use of both of my legs from nerve damage and my right hand, I also had severe foot drop in both feet, so I was quite the mess.I couldn't even close my hand. I went to a Naturopath and got off all those stupid drugs, Prednisone, Methotrexate etc I could go on and on. Changed my entire diet and life. I can walk, even run and I type and my foot drop is almost gone. I donated my wheelchair, walker and my cane. I believe we can get better and you can too, but must find the right Doctor is is proactive. We are all different, I am not saying everyone should throw their drugs aways but feel so much better without them. Sending you prayers and blessing ....

[Derek]

I have CSS and very early during treatment was advised by my euro consultant that repairs to any nerve damage, though not guaranteed, may take up to two years to recover. To help this process while in hospital (5 weeks) I was helped by a physio volunteer then the physio department after leaving hospital. After 4 years, nerve damage hasn't recovered completely and have patchy numbness in most of my muscles. However, I am able to do most tasks, albeit more slowly at times, and take Pregabalin when the nerves seemingly become over excited, usually evening time. I have what I describe as pins and needles feelings in my hands and feet continuously with the occasional localised, sudden electric shock feeling, usually somewhere in my leg or foot, as my rheumatology consultant said I would. My biggest problem with the nerve damage is that my hands/fingers are affected by the cold weather and reduces their functional ability. I wouldn't win any prizes doing up my shirt buttons . Please get referred to your physio dept to get all the help you can to manipulate your hands, feet etc. Good luck.

[AndrewT]

Dear maggs88,

It can't do any harm to mention a problem, can it? As stated above you may as well 'make them earn their keep', as it were! Hope you feel better soon- I was on cyclo for a while, some years ago too.

Sending you my best wishes AndrewT