Hi every one;
Im new here . I was diagnosed with "immune-mediated neuropathy" and some doctors mononuritus multiplix .
Until now they are not sure about the cause . Some of them advice to do the biobsy to exclude vasculitis.
Im using many medications but i dont see any change in my numbness fingers.
1-Im asking if vasculitis can be discover by blood test or it should be through biobsy?
2-What is your treatment lines ??
3- Any treatment options u have experience?
Best Regards
Hi,
The problem is that there are over 18 different types of Vasculitis and multiple blood tests that can help diagnosis in association with symptoms.
Other auto immune diseases can cause peripheral neuropathy as well such as Sjorgrens syndrome.
Where are you seen? You really need a specialist to decide what tests need done to make a diagnosis.
Hi Keyes;
Im so grateful .
I was in South korea and Australia and see many specialists.
I have done genetic tests hnpp; blood test; Anti neurone antibodies were all negative .
Finally most of them recommended to visit queen square in London or US .
With whom specialize with neuropathy.
Do u have any idea about any speacilist in UK?!
Thanks again.
Hi Ghayah, I originally went to my GP in August 2014 with numb fingers in one hand. She referred me immediately to a neurologist and over the next eight months I had every blood test and scan imaginable able. It was only when I had the sural nerve biopsy that she could confirm it was vasculitis. As the electro magnetic tests had shown that my left foot was also affected, she looked around for a surgeon to do this biopsy so that no nerve problems would mask what was happening to my hand. In June 2015 I started on six months of high dosage steroids along with increasing doses of mycophenolate move Tim which I stayed on until September 2017. In that time feeling returned in my left side and I can now differentiate between textures temperatures etc . There is still a numb feeling in my fingers but this could pass now I am off of the drugs. Good luck but you could find biopsy is the only way to get the right treatment
Hi. I'm in a similar position to you, with multiple mononeuropathies, just affecting the brachial plexus in my case. It is presumed to be due to inflammatory auto-immune disease, although this has not been confirmed on blood test. I had a nerve biopsy, but this was from the superficial radial nerve, a site quite remote from the actual disease site (plexus). This biopsy only showed axonal loss, and no evidence for vasculitis. In answer to your question, I understand that this type of vasculitis doesn't usually show up on blood testing, but may show up on biopsy.
I've had a fairly standard treatment; prednisolone, cyclophosphamide infusions for about 9 months, and azathioprine. I've had no more attacks, so hopefully this is working.
I've tried multiple drugs for pain (amitriptyline, gabapentin, pregablin, various opioids, duloxetine, etc, etc), none of which has helped much with the constant burning skin sensations. Morphine and tramadol did help the very severe pain I experienced during the actual attacks. I've also tried versatis lignocaine patches, again, with little effect. One thing that did seem to help slightly was capsaicin cream, but this stuff is a nightmare to use, it got in my eyes, down my throat, caused bad coughing attacks in myself and my wife, so I had no choice but to cease using it.
I hope this helps you somewhat.
Hi stevoj
I wonder how you are getting on now and whether the meds worked/still work to keep you steady?
I'm similar to you, being treated for vasculitis/mononeuritis multiplex without any actual evidence that this is the cause, even on biopsy of an affected nerve. I have no other symptoms of vaculitis. I've been on mycophenylate for 3 months now, it's not (yet) halted progression and I don't feel very well on it.
On the plus side I don't have the energy to worry too much!
It's unusual, even in the land of unusual we inhabit!
Be glad to hear how you are getting on for you now.
Hi Sam.
I'm really sorry to hear that the drugs aren't working for you, difficult to imagine what life must be like for you at present.
I've had no further episodes, so, bonus. Some of my damaged nerves are showing recovery - my left radial nerve motor function has improved significantly, and I'm now got a lot of use in my left hand. The nerve to right pronator teres muscle is about 90% improved, so near enough normal. My shoulder muscles are still weak but improving. I still have lots of skin pain, this hasn't really changed at all.
But my biggest problem is constant fatigue. This really limits what I can do, and I need to factor in a midday nap if possible, otherwise I feel dreadful. Any physical effort really exacerbates this.
I really hope that things turn around for you, maybe you'll be able to change your name to samisgettingbetter. Take care.
Thank you.
Glad to hear you're improving, and no further episodes is really excellent news.
If you don't mind me asking, do you still take azothioprine?
Must be just lovely to have your hands back, what a relief. If mine get better I shall get a hawk to fly.
Yep, still on the azothioprine, probably will be for another year or so.
Hi every one;
Many thanks for your responds and sharing your experiences.
All of your feedbacks were helpful.
✔I forget to mention I have tried (mecophenolate and steroids +gapapantine from last year tell now but nothing change 💔 )
✔Also I have done 3 times of IVIG and i will continue if it will be good .
......
Linjoyfrench;
*Can I know more about your experience in biobsy ? I have read on the internet that it has side effects and could cause permenant damage is that right!?
Also; Just to insure .. When feels return to u .. do u mean numbness decrease after 2 years of medications?
......
Hi Stevoj;
Yes its almost the same of mine also they mention it was axonal type with out doing biobsy.
Except that my case starts from my left ring fingers and then pins and needles in my feet After several months.
I can see almost you used many of medications that im using now.
**Can I know more about cyclophosphamide infusions ..why do they prescriped it for you?is it because of fast progression or does it work like immunusuppressent?
Does it have side effects?
Thanks again
Hi, yeah, I think I was given the cyclophosphamide because I was having repeated 'attacks' of nerve damage. It does have side effects. I felt very sick and drained for a few hours after each infusion. Also, it seems to have completely stopped my testosterone production, so I am now having testosterone gel replacement therapy. Also, it does give increased risk of bladder cancer, so I need to be monitored for that.
Hi Stevoj;
Im sorry to hear that you are experiencing that complications after the infusions .
Praying you ll get better soon and being healthy again .
*As far as I understand now after trying all whole medications you feel lettle bit comfortable with the cream results and stop other medications ?
*Do the doctors discuss plasmaphersis or ivig with u?
Im sorry to ask many questions ..It has been invaluable information for me .
No, I could not get on with the capsaicin cream, really difficult stuff to use, for reasons given in a previous post. The only painkiller I currently take is gabapentin. Why? I don't really know, I only take a very small dose (500mg/day), so it's probably not even having any effect. I am slowly withdrawing it.
I've been reading some recent papers about using Botox for skin pain treatment. This may be the next thing I might try.
Plasmapheresis and Ivig have never been discussed with me.
Ask as many questions as you need!
As the biopsied nerve was in my foot, I had no feeling on the left side of my foot for about a year. It didn't stop me walking or anything Evidently the nerves find a new pathway instead of going through the nerve that was removed. Two years after the biopsy it is completely normal again. With my hands, I suppose the easiest way to explain is to say that first of all I noticed that I could not feel anything with my left hand - different textures, hot or cold, and there was tingling in those fingers. I could not even feel pin prick's in fingers or toes. After diagnosis and the start of medication, I had a lot of different shooting pains in my hand as if it was coming to life again but if you asked me how my hand felt, it felt like the fingers were fat and swollen even though they were not. Gradually the feeling of hot and cold returned with the affected hand telling me that objects were hotter or colder than the unaffected hand. Shortly after this I began to feel pinpricks again . Although I have full use of my hand now, it still does not feel right with some numbness but at least I can use it now.
Stevoj;
Yeah as you said gabapentin is just a pain killer . Im using 600mg/day with minor effect .
Until now as i see most options are like pain killers in concept nothing work as a longterm treatment .
Linjoyfrench;
Before two years thats sounds you were involved in alot of stress with your difficulties in feeling. Im really pleased for you when You have respond positively after the biobsy and the medications.
Thank you both for your responses . I greatly appreciate what you have shared with me .
Next week I have an appointment i will discuss the new options treaments.
Let us keep on touch .
Hope every thing will be fine with u all.
I have Sjögren’s and have a degree of numbness pretty much everywhere, particularly in my feet and my face. Unfortunately my neurologist tells me that numbness is a “negative symptom” ie nerves have died and cannot be regenerated.
The neurological form of Sjögren’s can be mistaken for MS because the symptoms are so similar. I’m on the maximum dose of Mycophenolate to try to prevent progression but, sadly, I don’t think it is working. I was diagnosed by a very positive ANA and high IgG levels and 100% positive lip biopsy.
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