Have just been to see the Rheumatologist last week after a couple of months of increasingly severe neurological symptoms.
He thinks I have Sjogrens, maybe Lupus and Primary Biliary Cirrhosis and am on prednisalone injections and oral steroids at present. I am to start Mycophenolate in July after the last injection wears off.I am seronegative and bloods always normal so I am grateful to at least have a Rheumy who will treat me.
For years, as well as all the expected symptoms of those diseaese, I have totally dire muscle weakness in heat of any kind. I can't go near a spa and even a mildly heated swimming pool starts my legs trembling within minutes so I need help to get out and dressed. Once I am cool again the strength returns. Last week I had an alarming bout of eye problems with sudden flashing lights even in the dark at night and appearance of floaters and very blurred vision in one eye.I saw optician and was checked for retinal detachment but was all clear.
Now if I become even slightly over heated the blurred vision returns also.
When I explained this to my Rheumatologist he felt it had nothing to do with the suspected Lupus and I must return to Neurology at the Southern General whom I had attended for some years with disc problems resulting in an op for fusion of two neck discs.
This seems to have nothing to do with my neck op and the heat problem has been there for years but is now worsening. The eye problem is more recent but very persistent and affecting me most days , the blurring making me feel a bit dizzy and disorientated.
I had three brain scans looking for MS six years ago, before the autoimune diseases became so obvious and they were all clear of any lesions.
I know these particular symptoms are very suggestive of MS but since that was ruled out with the earlier scan , I wondered if Lupus or Sjogrens could cause something similar.
Be very interested to hear if anyone had anything like this ? Or even any other type of neurological symptoms with Lupus or Sjogrens ?
I just feel this must be related somehow to the rest?
It is all so incredibly complex isn't it, no wonder we struggle to cope with it all when the medics don't know the answers either! C x