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I have Sjögren’s syndrome, Hashimotos and ADHD and autism.  I have a past history of transverse myeltis, which is a one off MS type lesion in spinal cord.  

In Sept, I had this weird flare up of symptoms, where I had loads of numbness, burning, dizziness, but most weirdly goosebumps that appear in patches and at the wrong times.  neurologist discharged me after an MRI which showed no new changes, and stopped just short of saying it’s all in my neurotic little head! 

The goosebumps mostly appear for no reason, and usually in that case it’s a patch, on my left arm for instance, or one patch each on my left leg and left forearm.  It happens several times an hour, and has already happened a few times since writing this.   

Also, when I sneeze, I immediately get goosebumps all over from top of head to tips of toes... Or if I am cold waiting for my bath to run, no goosebumps, but as soon as I immerse myself in the hot water I get goosebumps all over.   

I get funny things with my heart rate and quite often feel unwell, but can’t say exactly what is wrong, just feel awful dizzy and weird. 

My rheumatologist says it could be autonomic problems, but that there is no easy test, and no good treatment so has kind of left it there.  But if I have something, I want to know... also I had heard that ADHD and autism could be linked to POTS and also I was told many years ago that I am hypermobile (although I don’t know about that now I’m in my 40s!) 

So I thought it might be an idea to find out if other have had similar, and whether it’s worth looking to get a diagnosis or not? (And who to get one from?! Not keen to go back to neurology)...

thanks 😊 

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