Hi. I have a four year diagnosis of RA/ connective tissue disease - now under review as I have no synovial swelling in my joints these days. Meanwhile I still have s systemic inflammation (inflammatory markers raised) and am being investigated by a new rheumatologist in a new area. I will see him again in two days time. He has a special interest in Lupus and Vasculitis. But none of my antibodies are positive now.
Meanwhile over the past years my main symptoms have been neurological. Specifically pins and needles in legs and arms and most recently in my gums, nose and left eye. So a year ago I was referred to a neurologist and he was very thorough. I had nerve conduction tests which showed nothing, I had a brain and neck MRI which only showed mild diseased vessels normal for my age of 52. I had a lumbar puncture which showed paired oligloclonal bands - which indicate a systemic process is occurring but not MS - which would show uneven bands in serum blood compared to cerebral spinal fluid. So a year ago my neurologist put my case back to rheumatology - saying he thought I had a clinically confirmed small fiber neuropathy. Having had a diagnosis and been treated for seronegative RA I accepted this at the time.
However nobody in my medical team would investigate my issues with balance/ dizziness/ disequilibrium / misjudging surfaces and doors etc. I suffered from this for 18 months. For my nerve pain/ parasthesia I tried Amitriptyline, Gaberpentin and Duloxetine - all with bad side effects. I have tried four disease modifying antirheumatic drugs for RA and have had severe allergic reactions to all. I have had three courses of oral steroids - most recently I took these for six months and at the higher doses my dizziness/ vestibular problem disappeared. After 18 months this problem has gone despite me being off steroids now. The remission of this symptom has been wonderful but I’m always fearful of it coming back now. I also have Hashimoto’s Hypothyroidism.
An oral surgeon I saw earlier this year told me that I should have a scan of the nerves at the back of my head. He said he has only seen parasthesia of the kind in my face in MS patients, despite this being ruled out a year ago. Another dentist told me the same thing but explained Vasculitis is sometimes misdiagnosed in as MS. I’m presently not fitting any disease that my rheumatologist can pinpoint.
Just wondering if anyone here has ever been in my shoes before MS was finally diagnosed?