Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 04-04-2018, 04:37 PM #1
MAT52 MAT52 is offline
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Location: Scotland, UK
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MAT52 MAT52 is offline
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Default Orthostatic Tremor from Small Fibre Neuropathy?

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

This sounds a bit slow 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 from a neurologist. I’ve read up and finally identified the problem being due to a rare type of tremor, 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. I’m told I have no large fibre involvement at all, reflexes are brisk but mild ataxia and distal numbness are confirmed.
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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Old 01-30-2019, 06:21 AM #2
WorriedGuy WorriedGuy is offline
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Quote:
Originally Posted by MAT52 View Post
I’m increasingly anxious that I might have Parkinson’s Disease as well as acknowledged small fibre neuropathy (SFN) relating to my confirmed Sjögren’s and historic Rheumatoid Arthritis.

This sounds a bit slow 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 from a neurologist. I’ve read up and finally identified the problem being due to a rare type of tremor, 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. I’m told I have no large fibre involvement at all, reflexes are brisk but mild ataxia and distal numbness are confirmed.
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Wow you have this too?

I'm in bad shape right now.

I was misdiagnosed early on. Turns out I had SFN which has progressed possibly after a cold I had in July.

I had asceptic menigitis a month ago and developed inner tremors and really bad balance issues. My balance is really bad to the point where I get motion sickness and fall from overstimulation. I lay in bed now feeling like my body is moving.

They claim it's functional disorder but I think it's likely to be brain damage of sorts from the menegitis.


Just had another doctor diagnose me with orthostatic tremor which developed from this.

How's your ataxia and are you sure sfn causes this?
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