Have you been diagnosed with Idiopathic Polyneuropathy?

[2Cor.12:19]

Hello. I've had ME/CFS for 33 years and from the beginning I had vibrating sensations in my legs that were always more pronounced when overly tired. For the past 7-8 years my feet have became numb and have the odd sensation of feeling like I've got plastic wrapped tightly around them. They're also freezing all the time. The sensation gradually moved up both legs and is now to my knees. Thankfully it doesn't hurt, but it is a nuisance and I'll trip or lose my balance if I'm not careful.

My neurologist did a nerve conduction study (EMG) and said I have Idiopathic Polyneuropathy. That means permanent peripheral nerve damage that is both sensory and motor and of unknown cause. I asked him about small fiber neuropathy which has been discussed here a lot, but this would be more advanced than that and is what diabetics get.

He said 30% of Polyneuropathy has no known cause, which is my case since I'm not diabetic, my B12 levels are good, my thyroid disease and hypertension are well managed, and I've never had a stroke. Because he doesn't know why I have it, he said to just be careful to check my feet every day for injuries that I don't feel, and also to use a night light and watch out for blisters. He's also keeping an eye on my memory as it's starting to slip.

I don't know if I should keep pursuing a "cause" for this, or just get on with life and let it do its thing if it's going to progress. I've already been tested recently for numerous autoimmune diseases by my rheumy, and I'm pretty sick of doctors and tests.

So, I'm just curious if anyone else has had an EMG and been dx'd with Idiopathic Polyneuropathy, and if so, what did they say about it?

Thanks!

You can find more info about this here:
https://www.hopkinsmedicine.org/neu...rve/conditions/idiopathic_polyneuropathy.html

 

[Sidny]

I was diagnosed with this early on in the course of my illness. Ganglionic acetylcholine receptor and myelin antibodies where found, both of those are associated nerve transmission and function.

Various viruses such as EBV and HSV effect nerve integrity.

Haven’t found any solutions and numbness seems to be progressing for me.

I would ignore the idiopathic and hereditary labels doctors love to slap those on when they’re too lazy to come up with a proper evaluation.

When you think about it, nothing is really truly idiopathic. I have various theories why it’s used in diagnosing so many diseases.

 

[2Cor.12:19]

@

Various viruses such as EBV and HSV effect nerve integrity.
.

@Sidny Thanks. I suspect EBV, HSV, and possibly HHV6 may be the ultimate culprits for me- From day 1 I woke up vibrating from head to toe.

And I agree- Idiopathic is a wastebasket label. But the wheels of science turn slowly, especially when there’s little awareness and funding.

 

[kangaSue]

Ganglionic acetylcholine receptor antibodies where found

Were you diagnosed with Autoimmune Autonomic Ganglionopathy from this then?

 

[Sidny]

Were you diagnosed with Autoimmune Autonomic Ganglionopathy from this then?

Yes I was actually. I never followed up with further testing or possible treatments for it though. I had sjogrens antibodies as well ones implicated in myasthenia gravis but my doctor diagnosed me with AAG.

Is there anything that can be done aside from IVIG for it?

 

[Gingergrrl]

Yes I was actually. I never followed up with further testing or possible treatments for it though. I had sjogrens antibodies as well ones implicated in myasthenia gravis but my doctor diagnosed me with AAG. Is there anything that can be done aside from IVIG for it?

@Sidny I forgot, are you or your doctor(s) opposed to trying IVIG for AAG (and your other autoantibodies & viruses) or were you trying to get it approved but it was denied by insurance?

 

[kangaSue]

Is there anything that can be done aside from IVIG for it?

If not IVIG, it's usually the other big guns of plasma exchchange, rituximab and mycophenolate (or a combination of them). IV corticosteroids are another option but I don't think this knocks down the antibodies. Anything else is for treating symptomatic dysautonomia, Northera (droxidopa), florinef, midodrine, Mestinon (pyridostigmine), octreotide.

 

[Sidny]

@Sidny I forgot, are you or your doctor(s) opposed to trying IVIG for AAG (and your other autoantibodies & viruses) or were you trying to get it approved but it was denied by insurance?

I unfortunately ceased follow up appointments due to finances but will be following up were I left off soon enough hopefully.

@2Cor.12:19 you mentioned being tested for antibodies but if you haven’t been tested for myelin and acetylcholine ones they are probably tests worth asking for.

Quest does a myasthenia gravis panel, a sjogrens one as well as an encephalitis screening all of which I had done and it seems like results of those tests correlate with lots of neurological conditions including the neuropathy you’re suffering from.

 

[Gingergrrl]

If not IVIG, it's usually the other big guns of plasma exchchange, rituximab and mycophenolate (or a combination of them).

That was my guess. I wasn't sure what mycophenolate was and Googled it and figured out that it is "Cell Cept" The first Neuro that I saw at Stanford mentioned Imuran & Cell Cept but my main doctor felt those were both too dangerous (in my case) and that IVIG was the most logical starting point.

Edit: Also, all of my doctors felt that plasma exchange was too dangerous in my case and no one would consider it for me vs. starting with IVIG. I had wanted to try it at the time but in the end, it turned out not to be necessary.

IV corticosteroids are another option but I don't think this knocks down the antibodies. Anything else is for treating symptomatic dysautonomia, Northera (droxidopa), florinef, midodrine, Mestinon (pyridostigmine), octreotide.

That is my understanding and experience as well (that steroids and dysautonomia meds are for symptom relief but do not get to the underlying cause). I did have some minor improvement in allergic reactions from Cortef and minor improvement in autonomic symptoms from atenolol & midodrine but none of those reached the underlying cause (in my case).

I unfortunately ceased follow up appointments due to finances but will be following up were I left off soon enough hopefully.

That is great news if you will be able to follow up where you left off!

@2Cor.12:19 you mentioned being tested for antibodies but if you haven’t been tested for myelin and acetylcholine ones they are probably tests worth asking for.

What are "myelin autoantibodies"? I was tested (in 2016) for the myasethenia gravis and MuSK autoantibodies but am not sure if that is what you meant by "myelin"?

Quest does a myasthenia gravis panel, a sjogrens one as well as an encephalitis screening all of which I had done and it seems like results of those tests correlate with lots of neurological conditions including the neuropathy you’re suffering from.

My doctor felt that the Quest panels were not as accurate or precise as the Mayo Panels (although I know that it is not always possible to get a doctor to run the Mayo Panels). I did do the Quest paraneoplastic panel at one point but it lumped a lot of autoantibodies together vs. testing each one separately like Mayo does so the results were not very helpful.

 

[2Cor.12:19]

@2Cor.12:19 you mentioned being tested for antibodies but if you haven’t been tested for myelin and acetylcholine ones they are probably tests worth asking for.

Quest does a myasthenia gravis panel, a sjogrens one as well as an encephalitis screening all of which I had done and it seems like results of those tests correlate with lots of neurological conditions including the neuropathy you’re suffering from.

@Sidny - They were looking for connective tissue diseases and blood cancer did antibody tests- Sjogren's, schleroderma, lupus, CREST, RA, I've pretty much had it with tests. LOL! I suppose I could go back and ask for more tests , but they need a diagnostic code that matches the test in order for insurance to cover it. I'm not worried about it - just curious to see how many others with ME/CFS have this.

 

[Gingergrrl]

They were looking for connective tissue diseases and blood cancer did antibody tests- Sjogren's, schleroderma, lupus, CREST, RA, I've pretty much had it with tests. LOL! I suppose I could go back and ask for more tests, but they need a diagnostic code that matches the test in order for insurance to cover it.

@2Cor.12:19 when you said they need a diagnostic code for insurance to cover it, did you mean IVIG or another treatment?

 

[2Cor.12:19]

@2Cor.12:19 when you said they need a diagnostic code for insurance to cover it, did you mean IVIG or another treatment?

@Gingergrrl - They need a diagnostic code the insurance company will accept to order lab work.

 

[Sidny]

What are "myelin autoantibodies"? I was tested (in 2016) for the myasethenia gravis and MuSK autoantibodies but am not sure if that is what you meant by "myelin"?

I believe these are antibodies implicated in MS but as per my research could come up in any number of other central nervous system disorders. I’m not sure if there’s an individual test for this but it was included in an Encephalitis panel from quest.

There were other markers on that panel that corresponded to optic neuritis and a few other central nervous system pathologies.

The MUsk antibodies I think stand for muscarinic acetylcholine receptors and I’ve read Parvo virus B19 and HSV can trigger high titers of these. Not related to Myelin as far as I know.

Also for the record, I don’t see any of these markers as “autoimmune” (as Dr. Amy Proal and other researchers are increasingly suggesting) but just normal antibodies to intracellular pathogens and foreign agents that mimic and highjack our host cells and their functions. I believe if we managed to eradicate theses pathogens the “autoantibodies” would disappear, thus resulting in a complete cure.

 

[Gingergrrl]

@Gingergrrl - They need a diagnostic code the insurance company will accept to order lab work.

If you and your doctor wanted additional testing, could your doctor explain that they are doing the testing in order to rule in or out a certain diagnosis (so they can't use the code yet b/c they need that test in order to help determine if you meet criteria for the code)? I hope what I just wrote made sense

I believe these are antibodies implicated in MS but as per my research could come up in any number of other central nervous system disorders. I’m not sure if there’s an individual test for this but it was included in an Encephalitis panel from quest.

Thx for explaining and I have never had that panel done.

The MUsk antibodies I think stand for muscarinic acetylcholine receptors and I’ve read Parvo virus B19 and HSV can trigger high titers of these.

I just Googled MuSK (b/c I couldn't remember myself even though I did that Mayo panel in 2016 and was negative). It says that MuSK stands for "Muscle Specific Kinase Antibodies" and looks like it is an alternative test for MG (for people who are seronegative but suspected might have MG). I hadn't heard of the Parvo or HSV connection (unless I have and am not remembering )

Also for the record, I don’t see any of these markers as “autoimmune” (as Dr. Amy Proal and other researchers are increasingly suggesting) but just normal antibodies to intracellular pathogens and foreign agents that mimic and highjack our host cells and their functions. I believe if we managed to eradicate theses pathogens the “autoantibodies” would disappear, thus resulting in a complete cure.

My two main doctors believe that chronic IgM+ EBV ultimately switched into autoimmunity in my case (and that this is very common in general). Is this similar to what you mean?

 

[2Cor.12:19]

I was diagnosed with this early on in the course of my illness.

Haven’t found any solutions and numbness seems to be progressing for me.
.

@Sidny - Do you have balance problems due to diminished motor and sensory function? Do you use a cane? Based on my EMG and Nerve Conduction test, my neurologist classified mine as severe which explains why I trip over my own shadow and have off and on bouts with orthostatic intolerance. I've decided to try using a cane, hoping it will enable me to walk a little faster and stand for a conversation without finding a a wall to lean against. LOL.

Also, I'm beginning to wonder now if some of my fatigue can be attributed to the polyneuropathy since I'm seeing everywhere that fatigue is often listed as a symptom. With ME/CFS it's easy to assume that all fatigue can be blamed on the CFS - when in many instances, co-existing illnesses are contributing to the fatigue. This has been especially true for me relating to Hashimoto's, Sleep Apnea, and anemia. All of those made my fatigue much worse before being treated. Perhaps PN does that too.