I still haven't had my peripheral neuropathy cause diagnosed. Its confirmed by emg and nvc tests but bloods all ok except P-ANCA positive (no mpo or pr3).
My neurologist has asked the royal free to do a sural nerve biopsy but I am worried about this. I am not in pain at the moment, just numbness in legs and hands, so I'm not sure that doing something that will make my foot 'dead' to touch and may cause pain for the rest of my days is a good idea.
How bad could it be? and what are the chances of pain? anyone had one?
What do you think..... please let me know if it went ok ... or not!
Thanks
Keith
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TallKeith
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I have never had a sural nerve biopsy so can't comment on the experience or after effects.
The most important question to ask is will it change your medical management? What are they looking for as they already know you have peripheral neuropathy. If the procedure is diagnostic and will lead to treatment then it's probably worth getting it done.
The problem with peripheral neuropathy is that the nerves take a long time to repair themselves, if there is an active disease process ongoing then you may need timely treatment to stop it in its tracks.
Are you seeing a Consultant with experience of diagnosing Vasculitis? There is a very good neurologist at the Royal Free called Dr Desmond Kidd who has a specialism in auto immune diseases that affect the nervous system, it might be worth asking for a referral.
Many thanks. I have seen a number of Rheumatologists and all seem to think vasculitis is unlikely. I saw Dr Persey at the Royal Free, and he was fairly certain it wasnt vasculitis.
However, the cause of my PN has still not been diagnosed and it is getting worse.
My main worry is that I'll have the biopsy and it still wont provide a diagnosis, but will give me ongoing pain. It seems a gamble I may have to take, I'm just not sure what the odds are!
Have you been checked out for Sjorgens syndrome? It usually presents secondary to another auto immune disease but can be a primary condition, although it's rare. It can cause peripheral neuropathy. Do you have any other symptoms?
There is quite a lot on the internet regarding primary Sjorgens syndrome and peripheral neuropathy. This is a good article although quite technical
It mentions that peripheral neuropathy can occur before the usual dry eyes and mouth. I am not saying that's what your diagnosis is but its worth asking if they have ruled it out.
Other symptoms are - feeling exhausted after slight exertion, bad taste in my mouth in the morning with bad breath (been to dentist and he cant see a problem). Aches in my chest beneath my ribs.
I'll mention Sjorgens to my Neuro on Monday and see what he thinks.
I'll read the link you sent in the morning as Im quite tired at the mo! however as I have distal sensorimotor polyneuropathy so it may well be relevant!
I had this done at Charing Cross Hospital in May last year. It was the only way for the consultant to confirm after all the tests I had had pointed to vasculitis. Other surgeons wanted to operate on my hand which was affected more but she ,as a neurologist, refused this and shopped around until she found someone to do the sural nerve. A year later, I have almost full feeling back in my foot - evidently other smaller nerves link up over time. There has been no problem at all with walking etc. Don't worry honestly.
Hi I’m following this post with interest as my rheumatologist wants me to have a nerve biopsy. I have PN in my feet. Does anyone know what this involves? I’m not sure I want it. I’ve been through enough already!
I'm still worried after reading all the reports on the internet, but I think I have no option really if I want to get a diagnosis. I'm seeing my Neuro on Monday so I'll talk it through with him. They must have done a few and can perhaps tell me the odds of pain etc afterwards (or during !!!) Was it an overnight stay in hospital, or a pop in, chop it out, go home after a couple of hours?
The op was very quick and was under local anaesthetic. I was the last one on the list so that other surgeons could watch. There was no pain involved in the op and I went home three hours after. I had to sit with foot elevated for couple of weeks for skin to heal. That was probably the worst part! There was no pain - when you think of it , with the nerve out, there wouldn't be. It was strange at first with half the foot being numb and I had to be careful I didn't tread on anything as I wouldn't have felt it! I have had no problems with the foot in the last year and it definitely made no difference to walking or going to the gym. Now sensation is almost back to normal .
I have had MPA for about six years.For most of that time I have been under the Care of the vasculitis clinic at the Royal Free headed up by Prof ALan Salama.
I also have extreme PN in both my feet.I can walk pretty well now but for nearly a year at the beginning I could hardly walk unaided.I still have extreme nerve pain.This PN developed almost immediately after a relapse early on that required a combination whack of steroids and cyclo.I think the PN was caused by a combinations of Chemo damage and vasculitis.Nerve and muscle damage tto the feet is a common symptom of Vasculitis.
I also had PN in my hands but it eventually went away but stayed in my feet.
It is pretty painful even now.I liken it to having your feet clamped in a vice,hit with rubber mallets then plugged in to an electrical socket whilst someone sticks needles in them.I found drugs useless but self hypnosis and relaxation techniques makes it better.
Blimey that doesn't sound too good. I suspect your problems are at the extreme end.
I've just seen my neurologist and he says 'up to you really' 5% chance of long term pain. Do lumbar punture at same time to look for inflamation. Could do lumbar puncture without biopsy if you want.....
So.. I've got a couple of weeks to think about it.
Booked in for 29th November. I could still wimp out I suppose, but want to get to the bottom of it so think its a chance I'll have to take. Wish I wasnt so worried about it...
Well, I had the biopsy two days ago... So that anyone reading this later and is going to do the same here are my thoughts and experiences so far..
I explained I am a wimp of the highest order when it comes to medical things so 30minutes before the op I was given 10mg diazepam. This relaxed me.
Wheeled into the operating theatre and put music on to distract me. Surgeon explained each step. Felt the needle going in for the anaesthetic but about the same as going to the dentist (probably a bit less as I dont feel much there!)
Felt a little bit of pulling and pushing whilst I chatted to technician about the music etc.
After 30mins the surgeon said 'all done' and that was that! I didnt look at the procedure at all during the biopsy.
Stayed in hospital overnight (most uncomfortable bit of the whole procedure as they leave you on the trolley!!)
Next morning was allowed up and walked a bit (to the loo). Shooting pain for about 2 seconds made me yell. Doctor said probably stitches pulling a bit as i moved.
Went home by car and lied down mostly due to lack of sleep. Cat attacked my foot whilst I was asleep which I jerked away - pain again like electric shock for 1 second. Less than first one.
Now into second day and getting occasional twinge shocks, very minor, when moving probably one every few hours.
Taking it easy as instructed so going to sit watching telly and phone for a pizza!
My thoughts so far is that it certainly wasn't as bad as I expected. The left side of my foot is numb as expected. I just hope it was worth the effort and the cause of my PN is found.
Still getting twinges like electric shock about once or twice a day. Nothing like as bad as the first one or two. They occur when I twist my ankle to a slight angle so I'm now walking carefully. Slight limp as it is still healing and feels odd. Rest of foot gets pins and needles and buzzing but this is probably part of my PN anyway.
The stitches are out and a sterastrip put across the scar - but I think not necessary. (I'll take it off in a day or so) It may be the cause of the 'shocks' as they pull a bit...?
Drove the car today for the first time - no problem with clutch (left foot was biopsied) so looking not so bad!
Will be waiting for results for a few weeks but will give an update then. Hands are getting worse so hopefully a treatable cause will be found......
Electric shock twinges seem to have passed and just occaisionally feel a twinge if i twist my ankle. Walking carefully but no problems.
The scar is healing - very sensitive to touch at the top and completely dead at the bottom. My left side of ankle is dead and left half of heel. Top of foot left side is dead down to left side of small toe. Sole is nearly all there. More or less what I expected. Doesnt seem to affect anything I do.
No feedback from consultant yet - so I'll be on the phone in the morning! I cant wait for an appointment in 3 months time to find out the results.......
Fingers crossed and good luck to all who follow...
No pains now - just numbness on left side of left foot. As expected.
Got biopsy results but still no answer to my PN.
"nerve biopsy showed inactive axonal neuropathy without inflammation" and "CSF showed a solitary IgG clone, not a typical oligoclonal pattern, of unknown clinical significance"
So who knows...! (Dr. Google isnt much help here either)
If you've seen my posts you'll see it all went well and I'm a bigger wimp than you! Some numbness as expected but now after 1 1/2 years hardly notice it. The first couple of days were the worst and even then only if i made sudden movement. You'll be fine. Good luck!
Just sitting here - feeling..... Small toe has no / little feeling. side of foot to around ankle bone has no feeling. But dont actually notice it now. Half way round heel no feeling. top of foot side has no feeling. Difficult to describe acurately - but more or less what i was expecting.
So - still dead little toe and not reduced in area that I can see. But not really an issue on the scale of things.
Hi happigirl, I had this done a year ago, whole experience same as tallkeith, except mine was done in Sheffield where they have a little cubicle theatre on the ward, and I was out the same day.
The size of the numb area is slowly reducing and I can feel my two smallest toes reasonably well now, just a little worse than the rest of my feet.
It didn't actually show vasculitis or infiltration, but did show demylination and axonal damage. It doesn't always show up in the biopsy apparently.
I found the 'hard evidence' of damage (rather than me saying it) with this and the nerve conduction studies was really useful in taking things forward.
Like tallkeith the remaining numbness doesn't cause me any problem...
You will need some help at home for a few days while you recover. I say this because they always advise this for small procedures, and it isn't usually true!
Hope that helps, and hope you get fixed up and make some progress. X
So... just had nerve biopsy from my ankle to look for things. A week after numb but not much pain.. Now 12 days after foot below cut feels very numb but not at incision.. odd.. just yesterday pain got worse after a walk. Was feeling good so took one. Today more pain than before and very odd feeling like rubber band snapping when walking along side of foot.. still very numb tho. Any comments....
5 weeks after mine nerve biopsy from my ankle to look for things. Found Axonal Neuropathy. Still numb from toe to heel. Also stinging pain under cut. Lots of tingling as well... I would not do this if I could go back in time now. Not worth it.. Since most neurologist dont have any great treatment for any of this that they find anyway... Dale... Florida...
Pain is probably from wound. It will fade and eventually you should get some normal feelings back. It will never be 100% but you wont really notice. Thats ny experience anyway
Thank you.. just freaks me out. Was no pain for 1st 7 days. Now stinging burning pain. feels like under incession but could be from cut i guess. Just sore to touch away from cut... 3 weeks after now. They did say i would be numb but NEVER MEANTIONED pain. Wonder how long that will continue.. numb from toe to heal tho.. THANKS for your answer.
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