I’m increasingly anxious that I might have Parkinson’s Disease as well as acknowledged SFN relating to my confirmed Sjögren’s and historic Rheumatoid Arthritis.

This sounds a bit mad I know but it’s taken me 8 years to recognise that the slowly progressing warm glow (not unpleasant) I get off and on in my arms with need to encase my hands and arms in warm, soft cushions or pillows when still or resting is actually due to an extremely fine tremor everywhere. And because this has only recently started showing up in a more noticeable resting tremor and sometimes an essential tremor around my body - I’ve assumed it’s part of SFN of my Sjögren’s.

My neurologist has made light of the impact on me due to normal reflexes and nerve conduction tests. So finally - what with this unaccountably strange problem with standing still (my knees/ legs won’t carry me so I have to sit or walk or lean on something) my GP (I’m in UK) has referred me to a different neurologist - hopefully one specialising in movement disorders.

This time I’m not taking any nonsense about “heightened health awareness” or just due to presumed SFN. I’ve read up and finally identified the problem being due to a rare type of tremor, orthostatic tremor. What is Orthostatic Tremor - which describes mine entirely.

What would be really helpful to know from anyone here is if this could be an aspect of my presumed SFN (never even confirmed by skin biopsy because the neurologist refused to run this test) or presumed autonomic dysfunction? I feel I must get answers soon as my life has been turned upside down by the widespread numbness and tremors now and my gait and balance and mobility are increasingly affected.

And on top of it all I’ve realised that it might be significant that part of my right knee is entirely numb at the on the outer side.

Can all this be the result of SFN or not? I’m told I have no large fibre involvement at all.

I'm sorry to hear that you're anxious. It's not a good place to be, but so common with such illnesses.

For what it's worth, I have the same symptom. MY SFN started with tremors, and they're perhaps the worst part of my illness, that and the fasciculations. My tremors started in my logs but now are everywhere. It's like they've moved up to my head. I don't know what to make of them, but I'll read up on OT, thanks to the information you've provided. I just assumed it came with the SFN, so damage to my small fibers. I also don't have large fiber involvement, though it's been 2 or 3 years since I've had an EMG, and may go in for another one given the increase in muscle weakness and fasciculations.

Good luck!

--small fiber neuropathy, by definition, attacks the tiny diameter, unmyelinated and thinly myelinated nerve fibers that subsume the sensory functions of pain and temperature and autonomic functions, motor symptoms are not part of the symptom profile. If one is getting tremors or fasiculations or other motor symptoms, that implies there is at least some myelinated larger fiber involvement, or some sort of central nervous system involvement (taking it out of the realm of "peripheral" neuropathy).

It's not uncommon for there to be mixed types of neuropathy, such as predominantly small fiber neuropathy with some larger fiber involvement. But pure small fiber neuropathy is sensory and/or autonomic in nature.

Thank you for your note, glenntaj. This is why I've been trying to convince my neurologist to investigate my symptoms more than he has. I'm now trying to find a new neurologist.

After the SFN diagnosis, and even before, my comments about such symptoms as shaking, tremors, or whatever you'd like to call, and well as fasciculations were mostly ignored. This is likely because nothing showed up on the EMG on three occasions. I'm not sure if that's because the large fiber involvement is so minimal that it's not picked up, or because there is CNS involvement. I do have some minor memory and cognitive issues, including slow processing at times, but that may be due to psychological affects arising from my terrible situation. If you have any ideas/thoughts here, I'd very much appreciate them.

At this point I've lost any real hope of finding the cause and of stopping the progression of my disease. But I will try to see some new physicians and see what, if anything, can be done.

Thanks again for your input.

Sorry I never responded but my alerts for NeuroTalk don’t seem to work. I feel very similarly DavidHC, regarding expectations of ever stopping this thing - or rather this mutipilicty of symptoms. I can’t fathom how we both end up with symptoms that appear to go beyond SFN, but don’t show up in testing for CNS/ large fibre involvement.

I’ve just seen my vascular doctor at connective tissue disease clinic and he is retesting my brain and cervical spine for progress of small vessel disease/ white matter/ cerebral vasculitis. Although this wouldn’t explain my main peripheral symptoms it could explain my issues with standing, mildly ataxic gait and disorientation in certain environments. And I think he feels that the other stuff might be some sort of small vessel vasculitis too.

Like you I have lost faith in my neuro - particularly since she described my pursuit of answers to explain my debilitating symptoms as “heightened heath awareness” - lol. I wrote her a very assertive letter calling each nonsensical point she made and I’m awaiting some sort of response. Meanwhile my GP has referred me back to neurology for a second opinion. But as my reflexes are “brisk” I don’t expect much to come of this or of the next neuro, my third to date. But the vascular doctor is very thorough and knowledgeable at least.

Thank you for writing. I do hope you get to the bottom of this, or closer, which it seems you're doing. It's so difficult working with these physicians and good ones are so rare. I had a good one, relatively speaking, but he is no longer accessible to me as he left the country. I've dealt with some bad ones, but I've never had to go to the extremes you have. Good for you for fighting back.

I will see whether the next one can help me. I'm not too hopeful. But perhaps I will have then rerun some of the tests to see if there is large fiber or CNS involvement now.

Best of luck to you!