Question about peripheral neuropathy

[deniselb]

I had an appointment for EMG testing which I just cancelled because the hospital is too far away. I've had numbness in my toes for years and now in my fingers as well. The appointment was originally scheduled at my suggestion because I wanted some baseline measurement by which to judge the progression of the condition.

I was planning to reschedule the testing at a more convenient location, but now I'm wondering if this is necessary. I understand that the test is unpleasant. I know I have autoimmune peripheral neuropathy. Is the test going to provide useful information or not?

[irish]

This is sort of a trick question but not on purpose. The thing is, sometimes the results are important and other times they aren't. It just depends on what the results are. That doesn't make sense but yet it does.

I had this done many years ago and it is uncomfortable but if you do the deep breathing and put your head in a different place you can make it through. My testing was negative but I don't know that the docs really knew why they were doing it. In a way it is good to know that it was negative because as the years have gone by I have developed more numbness and neuropathy in my feet. This is probably from diabetes, but who knows with this autoimmune stuff.

If you or your doctor are thinking this is more complicated you may want to do the testing down the road. I doubt I will ever do it again, especially at my age. I have myasthenia gravis and as it turns out this test doesn't always prove to be helpful in the diagnosis of the MG. Good luck. Irish

[Jaygeee]

I had the testing recently.  The neurologist told me that there are many causes of peripheral neuropathy and that defining the cause (autoimmune in my case), was the key to treatment.  The tests I had were able to distinguish between axonal degeneration and demylination, which apparently was also an aid to diagnosis.

I found the tests unpleasant, but not overly so.  Hope that helps.

[Carolina]

I've had three of the tests for Peripheral Neuropathy.  Twice in my legs and once in my arms.

WHAT IT'S LIKE FOR ME:  For me (with a high threshold for pain) the sensation isn't painful, but it is an electrical shock and therefore it always makes me jump.  It is unpleasant and the reaction is automatic.  Like hitting the 'crazy bone' in your elbow.  That probably doesn't help you decide (my description).

WHY DO IT?  A lot depends on how strong your 'need to know' is, at least for me.  I had NOT been diagnosed with any autoimmune condition (I have since been diagnosed with a different Immune Disorder), and so had no idea WHAT was causing my staggering gait, dropping of my feet causing me to stumble, inability to ride a bike etc. 

WILL IT PROGRESS? After my PN (profound, it cannot get worse) was found, my next biggest fear is that it would progress up my entire body, rendering me completely disabled.  I didn't know why I had it, so I didn't know what would happen.

WHAT CAUSES IT? My neurologist gave me a huge number of tests (brain scans, spinal scans, tests for every possible disease, spinal tap) and NEVER found the cause.   This was in 2010.

MY IMMUNE DISORDER; Subsequently I was diagnosed with Primary Immune Deficiency and my Immunologist thinks that my disordered Immune System attacks my organs/systems with something other than autoantibodies, damaging my body the same was that autoimmune attacks would.

WHAT TREATMENT?  There is no treatment for me that would fix the problem.  I believe that, for autoimmune conditions, Plaquenil/Methotrexate and some of the biologicals, if started before much damage is done, may prevent further damage.

I have IVIG every four weeks, and that strengthens my immune system by replacing the IgG that my body lacks to protect me from illness.  So I very rarely get sick from infections of any kind now.

WILL IT PROGRESS?  Unfortunately my Immune System continues to attack my body and I now have added Small Fiber Neuropathy and COPD (lungs), to the long list I already had before the PN was diagnosed.  By the way, my PN was disabling before it was found.  I had so many horrors going on my disordered Immune System I was completely unaware of the reality of the PN.

NOW OR LATER?  You can always change your mind if you decide you want the EMG testing later for any reason.  And you can STOP the test if you can't bear it.  It is done by a doctor or highly trained technician and you have control at all times on whether it will continue or not.

Best wishes,  Elaine

[deniselb]

Thanks for your thoughtful responses. I'm still mulling it over but I don't think I'm going to reschedule the test.

[irish]

Just a thought. What if the EMG showed info that made you eligible for IVIG. This could have earth shattering affect on your neuropathy and pain. Decrease and less pain? Just a thought. Irish

[Carolina]

Very GOOD point, Irish.  This is precisely why I have the tests recommended, no matter how anxious they may make me. 

And again, with the EMG you can STOP the process if it is just unbearable.  I know this because my neurologist has stopped the test on some of his patients for that very reason.

You really do have CONTROL over some things in your life.

Hugs,  Elaine

[SjoGirl]

My experience of twice having EMGs is that the first time it was painful and results were negative. I have had increasing issues with numbness and nerve pain so just had another EMG recently. It too was painful, but revealed that I have polyneuropathy on my left side (they did not test the right) and carpal tunnel

I was given a splint to wear at night for the carpal tunnel, it's been a godsend. Nothing can be done for the neuropathy and this test only IDs large muscle neuropathy, not small fiber (I might have a biopsy for that as well). What I do know is that it's probably not from demylenation, which means it's not M.S. It could be from SjS or a separate condition and that I can do is take the standard med for the condition.

While the test was unpleasant I personally needed the affirmation that my dropping things (which was happening a lot) was not me just being a klutz. I don't know whether it will progress or not, all that I can do is get up every day and live my life and manage the condition.

There are very good books about this topic, including one by Norman Latov, M.D.

Hope this proves somewhat helpful.

[Carolina]

SjoGirl is so right:  "While the test was unpleasant I personally needed the affirmation that my dropping things (which was happening a lot) was not me just being a klutz. I don't know whether it will progress or not, all that I can do is get up every day and live my life and manage the condition."

I was overjoyed to find out why so many things were difficult, and why I had so many conditions that no one else had.  We all, especially women, deal with self doubt and often find those around us unsupportive or even critical.

We ARE dealing with serious issues that often severely affect our lives.  And we keep on keeping on, because we find support and caring here.

Hugs,  Elaine

[Sooki]

You might ask your doctor that question. After all, your doc is the one who will be prescribing treatment from it! or not!

[anita]

As for the comments about testing showing a condition for which IVIG is the treatment.   Keep in mind that IVIG helps small fiber neuropathy (SFN) caused by Sjogren's...and EMG testing CANNOT detect small fiber neuropathy.  It can only check large fibers.  Skin biopsy is the ONLY way to check for SFN.

If the doctor is looking for SFN, then ask for a skin biopsy.  If he is looking for (or wanting to rule out---very important, too) large fiber neuropathy, then have the EMG.  So ask you doctor exactly what he is looking for and what (if anything) will change with your treatment plan, based upon what he finds.  This will give you a better idea of 'why' it's being done and whether you want to undergo the test.  It's not comfortable, but not horrible.  As Irish and others have said, set your mind in another place and focus on something else.  You can have the tech stop the test if you need a minute to re-focus, etc.

[deniselb]

Sooki, I don't want to go back to the neurologist I saw before for various reasons, so at the moment I don't have a doctor to discuss this with.

I was under the impression that there was nothing that would stop the progression of the neuropathy, which is why I thought maybe the tests were not necessary. The neurologist mentioned IVIG at our first meeting, but next time - after he diagnosed neurogenic dysautonomia - he was recommending that I treat the Sjogren's more aggressively with methotrexate, Cellcept or Imuran. He did not mention IVIG again. My rheumatologist doesn't think my symptoms warrant taking immunosuppressant drugs and I agree with her.

Maybe I will try to find another neurologist.

[SjoGirl]

denise it is correct that nothing can stop the progression of neuropathy, but then again you don't even know if it will progress.

As others have noted, there may though be some treatments to lessen symptoms and impact on your life.

Good luck as you determine next steps.