Electromyogram

[Pete]

Has anyone ever had an electromyogram?

I'm having one Wednesday. The Cleveland Clinic sent me an info sheet describing the test. It's two parts. First is a nerve conduction study involving brief electrical stimuli. Then comes the needle electrode exam to study and measure the electrical activity in muscles.

I have peripheral neuropathy in both feet (just tingling like my feet are asleep). The toes on both feet are most affected. I have lesser involvement above the toes. On my left foot, the involvement goes about halfway up my shin. The right foot involvement stops at the top of my instep, so far.

I'll talk to Dr Villa Forte about treatment (saw the threads about capsaicin cream) and prognosis. So far, it's not hindering me from normal activities, but I'm concerned that if it gets significantly worse, it will affect my ability to walk stably.

[drz]

I wrote a long reply but it disappeared so will try again tomorrow.

Got lucky and retrieved part of it from auto saved link.

[drz]

Has anyone ever had an electromyogram?

I'm having one Wednesday. The Cleveland Clinic sent me an info sheet describing the test. It's two parts. First is a nerve conduction study involving brief electrical stimuli. Then comes the needle electrode exam to study and measure the electrical activity in muscles.

I have peripheral neuropathy in both feet (just tingling like my feet are asleep). The toes on both feet are most affected. I have lesser involvement above the toes. On my left foot, the involvement goes about halfway up my shin. The right foot involvement stops at the top of my instep, so far.

I'll talk to Dr Villa Forte about treatment (saw the threads about capsaicin cream) and prognosis. So far, it's not hindering me from normal activities, but I'm concerned that if it gets significantly worse, it will affect my ability to walk stably.

It does but with practice one can learn to modify your walking pattern to accommodate the loss in motor nerves. I tripped a lot and had frequent skinned knees and hands until I learned this a few years back when it first affected my motor and sensory nerves. The sensory nerves is a bit tougher on balance. I lost my balance mechanism too along with hearing from Wegs over six years ago so balance is a problem and I wobble a lot when I walk and fall over if I close my eyes and try standing without touching anything to keep me grounded. I could never pass the old sobriety test of walking a straight line any time. For me now the neuropathy damage feels like walking with a big concrete or wooden shoe on the foot with most neuropathy damage but I am still able to walk slowly for half hour. Although it is pretty exhausting for me given the lung damage, kidney damage that limit endurance as the balance issues and neuropathy make walking more difficult and challenging. But it beats the heck out being on the knee scooter or crutches I had used for most of this year.

The nerve conduction test i have had a few times and it is not too bad but it felt like one of those science projects when you see the muscles twitch as they turn up the current. They save the most painful ones for last for good reason or no one would ever complete the tests. The good news is that the testing procedure usually reduces the neuropathy for a few days since all the nerves are getting a lot stimulation but the procedure is too complex and expensive to use for any on going treatment purposes.

My tests were always done by a physiatrist and confirmed i had serious neuropathy with more loss in motor nerves than sensory nerves.

[Girly3800]

Both my husband and myself have had this test. In my case it was to diagnose carpal tunnel syndrome - a pretty common use of the test. It was many, many years ago and I remember it being painful.

My husband on the other hand (who has Wegener's) had the study done last year and didn't find it painful at all. He had a particularly nasty flare last year and the residual damage was a loss of muscle mass in his hands and arms. The study was able to identify the specific nerve that was damaged - most likely by the vasculitis - and quantify the loss of electrical transmission. Turns out to have been the ulna nerve. Subsequently he had surgery to reposition that particular nerve in the hopes that the affected muscles would regain functionality. The surgery was pretty uneventful although the surgical site opened after 6 weeks and six weeks of wound care didn't heal it - so he had wound revision surgery. Healed fine that time and now we wait to see if function will be improved or restored - takes 12-18 months to see final results.

He also has neuropathy in his feet - mostly the right which was damaged early on before diagnosis by the vasculitis. He took gabapentin for 2 1/2 years which was of marginal help. By accident we discovered that Flexeril actually helped more - it is a muscle relaxer that he was proscribed for his spinal compression fractures (caused by the prednisone) but helps the neuropathy in some cases. It is another of those drugs like gabapentin, that are intended for one thing but sometimes helps something else entirely.

Hope your testing goes well.

Aldena

[Arleta]

I think that I had that done by my local neurologist...at least the needle part. But it only confirmed that I have nuropothy. Recently it has been getting worse. I had a CAT scan of my legs to check artery blockage since my pulse in my feet was pretty weak. It didn't show significant blockage in arteries to my feet, but did show blockage in an artery to my kidney, so I have to have it done again in 6 months. My last visit to my neurologist after that scan was very unsatisfactory. Even though the neuropathy is getting significantly worse, her only suggestion was wearing my compression stockings all the time. She thought it was worsening because in summer I haven't been wearing ANY socks.
I will be interested in hearing what you find out from your test, and what the treatment is!!

Sent from my SM-T800 using Tapatalk

[Alias]

Pete, I have not had the test, but during my insurance career I have talked with many people who have had it. I understand it can be a bit uncomfortable and that quite a lot depends on the skill/technique of the person administering it. Hope it goes well for you.

I had some strange altered sensation and numbness in my lower legs and feet, off and on, for quite a few years before being diagnosed. I never really had it looked into, but it pretty much subsided once I was treated for GPA. Do your docs suspect this is directly GPA related?

[Pete]

Thanks all! Dr Villa Forte suspects that my neuropathy is wegs related. Seems to be getting gradually worse. I feel it most in my toes, and it gets less noticeable once I'm above the middle of my shin.

[Jaha]

Pete,
I had the testing last year by a neurologist at CC and it can be a very uncomfortable testing. It turned out that I have small fiber neuropathy, they did a punch biopsy to find that. The neurologist told me that is probably due to my Wegs and to keep my Wegs under control. I have make a return visit to the neurologist, as mine seems to getting worse. I am wishing you all the best with your tests.

[Gab122]

Wishing you the best Pete!

[Pete]

Surprise!! Surprise!! My nerve conductivity test and electromyogram were normal. I have a nerve that's being pinched a little at L-5 in my back that may be causing the tingling sensation. No changes in medication are warranted for now. Dr Villa Forte sent new instructions for rtx to OSU today. One 1 gram infusion.

I had no trouble with either test. I found the nerve conductivity test a bit annoying, but I can understand how some might think it's painful. The electromyogram burned a couple of times when needles were inserted, but this was a brief sensation and even less painful than the needle stick for a blood draw.

[Gab122]

Yay!! Great news Pete! You've had a lot going on.... Time for good news! 😊👍 congrats on the ritux - I believe you have to fight insurance to get it each year. Correct? I'm glad the test yesterday was easier than expected!

[blm]

Pete -

Glad your test went ok.

Did anyone recommend a chiropractor? Before I was diagnosed with WEGS in August I saw one regularly and she was able to reduce tingling sensations in my legs, relieve sinus pressure, and reduce swelling in an ankle and foot I'd had for 40 years! I haven't been back since my diagnosis, but plan to check with my Rheumy if there is any reason I should not go. She was right on from the beginning about my inflammation problems. She just didn't have the medical tests to find Wegener's. She did recommend at one point that I go to a local clinic to be tested for a rheumatic factor.

Some people think I'm crazy - My chiropractor helped me before anyone else could.

Anybody else go to a chiropractor?

-- Becky

[Pete]

I go to a chiropractor for adjustments when my back goes out. I may want to more fully explore the possibilities...