It's official - I have neuropathy

[SjoGirl]

So I went for an EMG today which was as painful as I anticipated (I had one before). I initially refused, but my rheumatologist agreed with my neurologist that it was necessary to determine what is going on. Here is the overall outcome that the Doc was willing to share:

1. Mild to moderate carpel tunnel in left wrist

2. Pinched nerves in neck and lower lumbar region

3. Mild, but definite neuropathy on my left side - definitely progressed since he last tested me.

This doc was only did the testing so he could not offer a why. I see my neurologist on Friday and will know more then.

[deniselb]

How painful? Can you describe the test?  I'm scheduled for one in December.

[jazzlover]

Keep us posted on the plan to help you.

I vowed to never allow them to do that test on me again. Far too painful for me.

It was like being electrocuted.

[Tharrell]

I'm sorry y'all had such pain with EMG testing! I guess it really depends on the doctor performing it. My daughter and I only had mild annoying discomfort and some of the testing was rather amusing. My son however had hs done with a different doctor and he found some spots painful. All three of us were tested from head to toe.

[Carolina]

I've had the tests done twice on my legs, and once on my arms/hands.  It isn't painful exactly (I have a high tolerance for pain) but it is surprising every time the test is conducted (each application to a nerve).  The 'surprise', even when I KNOW it is coming, is the worst part.

It is less than the shock of a lamp that isn't grounded, because it really isn't in the ends of your fingers.  But it is in places that never get that sort of shock, and each time it makes me jump a little.  But it is a normal reaction to a shock, not so much the pain.

Well, if that makes any sense, I hope it helps. 

I have profound peripheral neuropathy in both legs.  I had carpal tunnel in both hands, but I had the very easy surgery (to me) for CT on my left hand. 

I have small fiber neuropathy in my forearms, hands, fingers, face, lips and tongue.  It is an itching burning stinging sensation.  But no PN there, so far.

Since my neuropathies are the result of attacks by my Immune System on my nerves, there is nothing to do to stop or cure the problem.  Since my Immune System is already 'deficient' the standard treatments to slow down Sjogren's (Plaquenil, Methotrexate) would be out of the question.  Of my 4 major immune factors, only one (A) is normal, one is at the lowest end of normal (E) and two are severely deficient (G and M).  With IVIG my IgG is now in the normal range.   I have to have IVIG every four weeks.

The IVIG has not changed my PN, by the way.  The treatment I have with IVIG is not the same protocol to treat PN.  I know some people here have had the IVIG protocol treatment for their PN and I wonder if their PN has improved?

We have our 'crosses to bear' for sure.

Hugs,  Elaine

[quietdynamics]

EMG for me was at times uncomfortable. The doctor cued me when he was doing procedure and I would do mental imagery and breathing techniques ( which I use often and tell Doctor.. Ok "I am going to leave you now.. not ignoring you"..LOL)
Deep breathing really helps me and image of being on a beautiful beach.. so that is what I do.

During this type of procedure you can ask for a moment to catch your breath, relax and know it is almost over.

Hope the Doctors can determine a protocol for you. 

EMG http://www.mayoclinic.org/tests-procedures/electroconvulsive-therapy/basics/definition/prc-20014183

[SjoGirl]

Denise, the test involved use of electrical impulses being sent through various body parts. As someone noted, it is less painful than shocking (as in "surprising").

The more painful part was the series of needle tests that the doc did from head to toe. There were a number of areas where I couldn't feel much of anything (I suspect where there was the most neuropathy) but a few others that were quite painful.

Quietdynamics, I did try deep breathing, which I have used for other tests, but it was unfortunately not very helpful. I did finally ask to take a break because I was ready to either burst into tears or lose my lunch. Fortunately, for the last part of the test the doc told me to get into a fetal position, that was precisely where I wanted to be.

jazzlover, I originally refused this round of testing because of the pain I had the first time around (about a year ago). My rheumatologist urged me to follow through because he believed we could not get to the bottom of what was causing my issues without it. He was correct, had I not had the testing we would not know what was going on.

Carolina, you have been through the ringer! I told my rheumatologist about the results, but I need to find out what type of neuropathy it is before he can say whether it's Sjogrens related or not. I see the neurologist on Friday and hope to know more then.

Thanks everyone, I will keep you all posted.

[quietdynamics]

SjoGirl.. "Head to Toe" wow. That was extensive and thorough. Mine was located in arm/hand.

I remember getting a cortisone shot in my shoulder (1st and last time).. I actually yelled the "f" word. Sweated and felt faint. Geesh.
Shot set something off and left that arm useless for months .. I had to lift it with my other hand.

So my sympathy and empathy to you.
Good thing is procedure is done and hopefully some form of intervention will ensue.

[gurs]

Ok, so now what? what treatment options? Neurontin, Lyrica? dont think alot can be done. My doctor doesnt even want to put me through all this testing when we know I have it.

I guess having a diagnoses confirms though, making us feel like we are not losing our minds, and that is a real condition.
Im glad you found some answers.

Gursie

[SjoGirl]

Hello all,

I saw the neurologist today -- he said I have both poly and mono neuropathy and that it is mild. He was not able to say what the cause might be, could be age, maybe SjS, maybe something else. As Gurs noted, there isn't much that can be done.

I do definitely have carpel tunnel in my left hand and need to purchase a splint to wear at night. I also have to have another MRI on my neck to see if something has changed that is causing the pinched nerve.

He ordered a Medrol pack in hopes that it will calm things down. Otherwise I am pretty much stuck with the same diagnosis I've had for years, back neck and spine all due to osteoarthritis, stenosis and disc issues.

Thanks for listening and for your support.

SjoGirl

[gurs]

SjoGirl,

At least you have the confirmation. I stopped putting myself through alot of testing because in the end, there is nothing that can really be done. What about Rituxan? The steriods Ive been on for years just created more issues for me too. Its really upsetting. They truly have no idea about how SS effects our Nervous system. I have so many MS symptoms, but dont have MS.

Hang in there!!!!

Gursie

[SjoGirl]

Gurs, I sent messages to my rheumatologist and GP with results from my EMG and comments made by the neurologist. I said:

1. to my rheumatologist that I'm frustrated, not with anyone in particular, but this process. I asked if there is a way to determine if the neuropathy (turns out that I have mono an poly both, though mild) could be from SJS (neurologist "thinks" it's from my neck/spine).

2. to my PCP I'm frustrated and tired of being told symptoms are because I'm old (docs imply age everytime I see them, I am only 58 not 70). Also said I was upset that neurologist would not give me result from the EMG (he said they don't like to give them out) and that I want a copy).

Finally I said I'm tired of everyone just throwing more meds at my situation (they are upping my Gabapentin). I used to take very few meds, keep on adding more and taking higher doses and cannot see this trend going in a good direction.

My PCP wishes they would put me on a biologic already, but if it's really my spine and neck that of course would not help. Rheumatologist has hesitated to use biologics without more testing and because I'm med sensitive.

Thanks to you and everyone, so good to have this group to vent to and commiserate with!

[gurs]

We'll, sounds like your doing everything right. I stopped asking questions because it seems no one has any answers on why I have all these things wrong with my body..just chalk it up to autoimmune.

My health just keeps getting worse too..My CNS issues are really getting to be a struggle, and I think along with the POTS, I might
have Ethos-Danlos syndrome. I am also super med sensitive so I avoid anything, however, I tried Rituxan several years ago and think it helped with the CNS issues and prevented things from getting worse, so I may give it a go again. Everytime I try to get an infusion, some infection pops up. My doc-infusion center was very careful with me before I had rituxan. I did all the pre-medications for it, and also they doubled my infusion time to around 8-9 hours, and also gave me saline IV along with my infusion which helped. I felt sick for 2 weeks after it. My doc also gave me script to have some medrol handy and I took more of that the first 2 weeks which helped with side effects and reactions.

I think you probably wont get any answers so it depends on your quality of life issue. Maybe a biologic would help? who knows?
We are all in the same boat....what do we do?

take care

Gursie