Neuropathy

[ingemlb]

Ok here is another confusing symptom which I would like some advice on in case others have had similar experiences.

Background:

2005 - late in the year I had a bout of cellulitis in my left leg which hospitalised me and I had to have intravenous antibiotics.
Then later still i was in the yard walked backwards and fell backwards onto a huge boulder.
Some time later I noticed a patchy numbness in parts of my feet and several toes. Not exactly same place in each foot but very distinct. As I had no pain preceding the numbness or any pins and needles it seemed to start suddenly i.e. I didn't notice it arriving gradually.
My GP thought i may have hurt my spine in the fall but decided to also send me to a Neurologist who did a nerve conduction test. The neurologist (early 2006) discovered that some of the nerves had died and diagnosed it as Diabetic peripheral Neuropathy as I was insulin resistant and he classified that as pre-diabetic. I had never been diagnosed diabetic at this stage and was very surprised but was told you can get the complications of diabetes long before the disease is diagnosed. I also saw an Endocrinologist at this stage and he agreed with the diagnosis and both of them told me it will never reverse but new nerves may grow in time and take over but if I lost a lot of weight I could avoid becoming diabetic and avoid the neuropathy from spreading.

Current:

The feet are still numb. Then when I was first in hospital I ends up with pins and needles in both feet, right throughout the feet. This Endocrinologist didn't believe the diagnoses of Peripheral Neuropathy made in 2006 and asked for a new Nerve Conduction test to be made. This test, despite the numbness, found my nerves were all fine, nothing dead at all. So the Endocrinologist and Neurologist decided it's the smaller nerves that died and that could only be tested by biopsy and that could end up with sores that won't heal so i obviously am not interested in going down that track.

However I now still get the pins and needle or tingling in the feet and today pain the the toes on the right foot. They are saying this can't be tied to the Wegener's as it never progressed and didn't go into the hands so no idea where the original numbness came from or if the nerves were affected by the Wegener's way back then and sort of the disease didn't progress in that area?

Interested in others' experiences. Thanks, Inge. :unsure:

P.S. I mentioned the cellulitis because in 2012 I had a small horizontal bone removed from my shin which on biopsy was considered calcified inflammation. As it was in the same part of the leg as the cellulitis they agreed it probably stemmed from that time. Hence I was wondering if the cellulitis inflammation kicked off anything.

[drz]

My diabetic neuropathy got worse after finally diagnosed with Wegs. My diabetes was also undiagnosed for several years due to poor choice of doctors for symptoms so my neuropathy appeared a a couple months after learning I had diabetes. It is progressive but does vary a bit in severity so some days it seems worse than other days. I noticed the pain seemed to decrease as the numbness increased over the years. It also seems to keep changing over time as new nerves are damaged and destroyed. Wegs can do lots of different things so it is difficult for some one to say it can't be Wegs. Neuropathy can also be very different in different people just like Wegs.

[windchime]

I too have neuropathy in my feet which has been diagnosed as diabetic neuropathy. It has gotten progressively worse in a short period of time
(a year) so I think wegs has something to do with it. It can get downright painful at times. I take Lyrica which helps a lot. I also take Mirapex for restless legs and some how that also calms the nerves.

Lately I realized that the pain is worse when my feet are swollen. This makes sense I just never connected the two. I also take Metanx which is a "food supplement" in pill form, by prescription only. My neuropathy has seemed to improve over the last 60 days or so I've been taking it. I don't know if it's the pill or the wegs meds. I'm grateful for whatever is helping.

[ingemlb]

Thanks Cindy and DRZ.
The strange thing is that from the time I noticed it in 2005 until recently the only symptom was numbness never pins and needles or pain. It also never increased or decreased.
Then in the last couple of weeks I started to get the pins and needles in both feet and since Friday pain under right heel ghen ankle then 3 smallest toes, sids of foot and side of right leg behind knee.
As the pain is quite severe on walking but also unpleasant when lying we are try to figure it out. It started 2 days after dropping pred from 30 to 20 mg but then increasing to 25 didn't bring relief. So now rheumatologist is trying 2 days of pred at 40 to see if that will shock it away.
Will post results of test. Inge

[renidrag]

I went through the exact same thing Inge, misdiagnosis, pre-diabetic and so on. Was on Metformin for a while but was taken off of it. Then I lost 25 pounds so I guess I am now post pre-diabetic, I don't know. Bloods have been fine. My neuropathy remains a constant reminder of WG. Numb toes, sides of feet, pain in the balls of my feet. Had terrible heel pain but got cortisone shots in each heel and have been fine ever since. What are the side effects to Lyrica? Dr. said he could give me something. Side effect was weight gain, said no thanks.
Dale

[RudiK]

I lost feelings in my feet and toes about a month before being diagnosed with WG. The itching and burning started about a couple of weeks after the loss of feelings. When I was diagnosed with WG I was told that the WG had caused the peripheral neuropathy. The itching and burning was there all the time. My docs tried different meds and finally settled on 200 mg Gabapentin which then reduced/almost eliminated the itching and burning when I resting,but is still there when I'm walking. I have regained some feelings in a couple of spots on the bottom of my feet and those spots are now super sensitive.The docs never performed a nerve test, their opinion was from the beginning that WG caused the damage.

[Carol]

I did alot of googling when I had nerve damage from the Wegs and the only thing that seemed to come up was WSN Nerve support Formula from the US. I took this on and off for about 12 months. My feet have slowly and surely improved - BUT will never be certain if the tablets helped or if it was just the gradual healing. I haven't regretted taking them as the only problem was that my urine was yellow and I seemed to need to go to the toilet more often. There is no problem getting them into Australia although Customs always opened them as they are a capsule of white pwder. Regards Carol Lakes Entrance, Victoria Australia

[ingemlb]

Thanks everyone. I am beginning to think that the start of the Neuropathy in late 2005 may have been part of Wegener's but for some reason it progressed in other areas. I spent 2006 walking everywhere sometimes for 8 hours a day in a mad dash to lose weight get fit and avoid diabetes. I did lose 25kg of weight but none of the health issues improved and then we discovered at the beginning of 2007 that my immune system was compromised. I started a trial protocol that stimulates the immune system and many things improved however from late 2009 totally new symptoms arrived. At that stage I should have stopped and gone for tests to find out why. was going wrong:( but I figure other things improved these too will go :(
This time round I think was a massive flareup of Wegener's. Maybe I could have been a lot better had I had this diagnosed earlier however reading comments on this forum in my case they may never have thought of Wegener's and it could have taken just as long to get diagnosed. At least this time round it was all rather obvious and now I feel a kind of hope that maybe all those new problems (Eye ulcers, tongue ulcers, gastric ulcers, IBD, Sinusitis) were due to ONE disease not half a dozen.
Today I swallowed the extra Pred so hopefully in a few days I will be much improved. If not of course then we are back to square one :(
Carol : Lakes Entrance is one of our favourite holiday spots. Spent a few weeks there in 2012 and were actually hoping to go there again later this year but that was before this Wegener's entered the scene. Will have to wait and see how things go before we book. Anyway it's a lovely spot :) Inge

[windchime]

What are the side effects to Lyrica? Dr. said he could give me something. Side effect was weight gain, said no thanks.
Dale

One of the side effects is weight gain. I probably gained 10 pounds. I've been on it for 8 years. I tried to change to gabapentin late last year and after upping the dose and still not getting as good of results as with the Lyrica I called the doc fo get the Lyrica back.

RudiK: I've had the itching too and it is almost worse than the pain. Although it's not painful you just want to claw the bottom of your feet to shreds.

Carol: I tried the neuropathy formula for awhile and didn't get as good of results as with the Metanx.

My podiatrist wrote a script for a compounded cream that is applied directly to the bottom of your feet. Two of the ingredients are gabapentin a muscle relaxer along with some of the local pain relievers like xylocaine. It also works fairly well. I find it really effective for the itching.

[Wegetarian]

I've had something similar since last Sept or October. My feet and hands easily go numb and at times have this slight tingling sensation in my feet. Was kind of surprised that I got it when I was on my meds, since from what I understood new symptoms wouldnt start when on the drugs. Dunno. Its not painful, or even that unpleasant. More like my hands easily fall asleep if I have them in a bad posture, like under my head while in bed. I'm going for some nerve tests next month, so maybe I'll know more then. That tingling sensation is happening less, even though I'm on a fracture of the pred dosage I took last fall. So far it hasn't been painful at all, so not really interested in taking any meds for it. Wondering if it could be a side effect of cutting the pred dosage as I guess it changes the metabolism somewhat? Then again I do remember reading about it in regards to Wegs and haven't noticed it mentioned in articles about pred.

[lfu2]

Hi, I also have Peripheral Neuropathy. I first noticed it last November when I had some discomfort in my feet. This progressed as I was weaned off prednisolone. i am now down to 10mg and doing well with regard to the Wegener's. But the discomfort in my feet has become a big problem.I have tried various painkillers before but to no or little avail.
The sensation in my feet was the feeling before you get pins and needles; that never never land where everything footwise is super sensitive. Also the feeling of just before you get cramp... but it never comes to anything.The pain increased in July until I was having continuous pins and needles and walking was becoming a problem.... it felt like i was walking on pebbles or shells in my bare feet. The only relief I had was after walking (painfully) for about half an hour the pain did subside, but returned on resting.
My GP told me that it is difficult to diagnose and my Rheumatology consultants (to be fair to them) were concentrating on getting my Wegener's under control and they tended to view the foot business as a side issue. I also have nerve involvement as a result of the Wegener's and I think they put it down to that. Anyway last Friday it came to a head. I was at a retail park with my wife and walking was extremely painful. I was hobbling like an old man. Now at 68 years old some may say that I am an old man, but inside my head I am young. Something had to be done.
When we got home I tried some Tramadol. I took 2 x 50mg tablets. Within half an hour I was painfree. I took another two tablets at bedtime and I was painfree all through the night. Two again the next morning and again painfree. Needless to say, I am continuing to take them. Walking without pain is sheer bliss. Don't get me wrong, I still have some discomfort in my feet, but no pain.
This has worked for me. It may not work for you but it is well worth trying. lfu2

[renidrag]

I have been put back on low dose prednisone and that is working for me right now. Started feeling less and less pain from the first day. Only 5 mgs. right now and no weight gain. I didn't know how long the good feeling would last but has been one month now and doing well. I think vdub is doing the same thing and he has had good results from low dose pred also.
Dale