Has anyone had their peripheral neuropathy show up on an EMG and nerve conduction study?
I went to a neurologist earlier this month who couldn’t get certain reflexes in my heels/ankles and told me he was sure I had neuropathy but to come back for an EMG/NCS to confirm it. I went back for the study yesterday and he diagnosed me with sciatica instead because that was the only nerve they found an issue with. When I told him that it was my understanding that Sjogren’s causes SMALL fiber neuropathy not picked up on nerve conduction studies he insisted instead that Sjogren’s causes LARGE fiber neuropathy and so therefore I don’t have neuropathy at all.
Im confused here. Am I really supposed to believe that I have sciatica in my left leg only when I have never had pain in my upper leg but do have numbness and tingling in both feet???
Would love to hear others’ views on similar experiences.
I had an EEG & nerve conduction study for right sided neuropathy & they were both normal. Still having numbness/tingling off & on. My neurologist said the next step would be a nerve biopsy, which I’m holding off on!
You can not test for small fiber neuropathy with an EMG nor could small fiber neuropathy effect the nerves he was testing (or for that matter the reflexes he thought were missing) Sjögren patients can rarely suffer from severe neuropathic pain, with small-fiber neuropathy causing lancinating or burning pain which can disproportionately affect the proximal torso or extremities, and the face. These are sensory nerves. The one that "feel" But it is totally dependent on which glands are affected. It is a secondary effect In short these are not long sheath encased nerves that can be tested by EMG. SS will cause direct damage to Mylar sheaths of these nerves which is what he was talking about and fortunately you don't have. Often these conditions become a much more severe related disease such as MS or Lupus. Often times, there is also myelitis which is often confused with MS.
The technique of skin biopsy, assessing for the intraepidermal nerve fiber density of unmyelinated nerves, provides a useful technique for neurologists to diagnose small-fiber neuropathies, especially when there is such a non-length-dependent distribution. This however while related to SS is a different condition. Also found is Trigeminal neuralgia and glossopharyngeal neuralgia. Its is treated as small fiber neuralgia even though it is not. Sadly the only way to know for sure is as Disney Girl pointed out, is a nerve biopsy......
I have neuropathy as well but don't actually know what type. He did do the nerve conduction and EEG as well as an MRI to be sure there were no lesions. Gabapentin helped a lot with the symptoms for a few months, though he stepped me off it recently. He wants to see how I am without it now. I like a doc that is thorough but I definitely feel like they are guessing a little when it comes to dealing with SS.
Before Plaquenil, I use to get sharp stabbing and burning pains in both my upper thighs, along with numbness and tingling sensations. Sometimes it was so bad, it would wake me up from my sleep and I would be screaming from pain. I would tell my doctors and they gave me gabapentin, but it still kept happening.
I haven't had an incident of this happening in a very long time. I am still on Gabapentin, which I take with Plaquenil and I think these are the two things which have made the difference.
And I have to agree totally with EnjoyLife; I feel like they are guessing half the time when it comes to SS. Which leaves us where?
I was diagnosed with Trigeminal Neuralgia due to pain on the left side of my face, based on the fact that Gabapentin took the pain away. However, as time passed, I don't have the classic symptoms of Trigeminal Neuralgia. I think it is small fiber neuropathy in my face, mostly on the left side. I have had an MRI which they said was normal, but not one with contrast, and no nerve conduction tests. I have started to notice some neuropathy in my right foot. I only have pains sporadically, and they don't last long. Not enough to make it worth treating, as the drugs I have tried all made me loopy, and I am still working. I think this is all Sjogren's related, but I don't have a good rheumatologist. I am just seen by my pcp and a neurologist, and occasionally by an ent.
The neurologist who did the nerve testing on me was very clear that Sjogren's can cause small fiber neuropathy. We held off on doing a biopsy because things quieted down enough for it to not be worthwhile right now.
I’m being investigated for SS. I used to have very dry eyes years ago but not now. But I have great trouble walking. My new neurologist says SS can manifest neurologically like MS. I used to have strange absence of feeling in my legs too. Anyone else have trouble walking. Neuro says it not MS.
Myelitis is one of the things that occurs with SS. Its often misdiagnosed as MS. Its very important to get it right as the treatment is way different.
Angela said:
I'm being investigated for SS. I used to have very dry eyes years ago but not now. But I have great trouble walking. My new neurologist says SS can manifest neurologically like MS. I used to have strange absence of feeling in my legs too. Anyone else have trouble walking. Neuro says it not MS.
Hi everyone! I am new to this site but when I saw this discussion I wanted to relay my experience with nerve pain. My nerve pain is quite unique in that it is solely on the right side of my tongue. This caused extreme pain when eating, drinking and sometimes even talking would bring on the pain. Before I was diagnosed with SS I went to several different doctors to find out the cause of this pain but no one could give me any answers. I even had my tongue biopsied by an oral surgeon! After finding out about SS and small fiber nerve pain I really believe it is the cause. My rheumatologist sent me to a neurologist who immediately started me on the anti-seizure medication and the pain has gone away! She also did an MRI of my head with contrast and it was normal so I'm assuming that the pain is SS related. Just wondering if anyone else has had localized nerve pain similar to this?
I do, but then I have Eagles Syndrome, caused by elongated styloid processes, which I believe are compressing the nerves in that area. Your symptoms actually sound quite similar to ES! I'm on amitriptyline, which helps quite a bit.
Oh wow, I've never heard of Eagles Syndrome. I will have to research that and find out about it. Thanks for your reply!
Jules said:
I do, but then I have Eagles Syndrome, caused by elongated styloid processes, which I believe are compressing the nerves in that area. Your symptoms actually sound quite similar to ES! I'm on amitriptyline, which helps quite a bit.
Anticonvulsants are actually used to determine if its small fiber pain. The most common cause incidentally is hyperlipidemia especially in women. Its fairly common to misunderstand what a small fiber neuropathy really is. One of the hallmarks of a pure small fiber neuropathy is a normal or near normal physical and neurologic examination. The coordination, motor, and reflex examinations will be normal. Light touch, vibratory sensation, and proprioception also may be normal, resulting in diagnostic confusion in some situations. Patients may have decreased pinprick, decreased thermal sensation, or hyperalgesia in the affected region. There may be mildly decreased vibratory sensation in some individuals. Associated skin changes in affected areas may include dry, cracked, or shiny skin, with decreased moisture on the surface of these affected areas as well.
TJ...I'm going to pick your brain on this one (as I don't see the neurologist for another 2 months. He had me on gabapentin for about 6 months and it helped immensely with nerve pain. (it was generalized, felt like strong pinpricks usually but also some pain and numbness intermittent in the arms, hands and feet. Things like that) I was thrilled with feeling so good but then he stepped me all the way back off it because he wants to see how I am off the medication totally. Why would that be? It it part of ruling small fiber in or out, do you think? He is a good doc but not big on explanations.
Yes the anti-seizure med has alleviated the pain. I have not heard of Hyperlipidemia so I will have to check that out also. But you are right about the small fiber neuropathy. During my neurological exam all my coordination, motor and reflexes were normal. However, I did have some numbness on my tongue where the nerve pain was. I've really gotten some great info! Thanks so much!
tj1 said:
Anticonvulsants are actually used to determine if its small fiber pain. The most common cause incidentally is hyperlipidemia especially in women. Its fairly common to misunderstand what a small fiber neuropathy really is. One of the hallmarks of a pure small fiber neuropathy is a normal or near normal physical and neurologic examination. The coordination, motor, and reflex examinations will be normal. Light touch, vibratory sensation, and proprioception also may be normal, resulting in diagnostic confusion in some situations. Patients may have decreased pinprick, decreased thermal sensation, or hyperalgesia in the affected region. There may be mildly decreased vibratory sensation in some individuals. Associated skin changes in affected areas may include dry, cracked, or shiny skin, with decreased moisture on the surface of these affected areas as well.
That could be the reason, although some of these neuropathies are also temporary......
EnjoyLife said:
TJ...I'm going to pick your brain on this one (as I don't see the neurologist for another 2 months. He had me on gabapentin for about 6 months and it helped immensely with nerve pain. (it was generalized, felt like strong pinpricks usually but also some pain and numbness intermittent in the arms, hands and feet. Things like that) I was thrilled with feeling so good but then he stepped me all the way back off it because he wants to see how I am off the medication totally. Why would that be? It it part of ruling small fiber in or out, do you think? He is a good doc but not big on explanations.
I have learned a bunch from reading these posts. I had EEG and other tests done last fall due to neuropathy from my waist down through my toes. My left side being worse then my right. The neurologist didn't know why the tests were "not to bad", his words. When I asked what to do next he said "I don't know. What do you want me to do?" I told him he was the doctor and he told me there was nothing he could do. I was so disgusted. I am on Gabapentin and it helps some. I have trouble walking because the numbness is so bad but standing is horrible too. My feet feel like they are huge and like I am walking with cement blocks instead of feet. I also have balance issues. Anyone else having balance problems with the neuropathy? Thanks for this discussion.
Definitely not temporary….I have had a few mornings where I'm really considering calling him to beg him to put me back on them. Waiting a few months for another appointment isn't necessarily going to be a good thing,
Reet, I'm sorry to hear your doc doesn't seem to have a game plan. Its disheartening. To answer your question though, when things are flared up, yes I definitely have trouble with balance. Also have trouble with some motor skills. I tend to bang my hands into cabinets & shelves because my reach is off, etc. Its odd. Same for brain fog. I lose words etc. All of that was better with the Gralise though. (gabapentin) have you tried keeping a symptom diary? maybe that would help give the doc a fuller picture of what's happening….