Got my third Nuero visit in a year next week. At first. Visit told me it looked like MS and I had head and c spine MRI. Second visit told MRI was clear so it. Was not MS, asked about worsening symptoms, still had a numb arm. Was told my legs would be worse and my problems more to do with Rheumatology problems! Was sent for a Devic/NMO blood test - negative would see me in 6 months. Since then I have had to go to the bladder clinic, am still having unexplained eye problems and have nerve pain, plus all sorts of numb bits, pins and needles, cognitive problems, balance issues and fatigue. I have got a list to take with me, but have then feeling that he will discharge me. I have been told I have Raynards and un conective tissue disease but this does not account for all my symptoms. Any ideas, questions I should ask? Tests I should req? Thanks
Hi what kind of connective tissue disease have you been told you have? If it were sjorgrens then this can cause problems with spinal cord and peripheral nerves. It is one of the ms mimics. There is some treatment for this.
It’s undiferential CTD , not sjorgrens. As far as I can see CTD does not cause nerve pain or bladder problems.
This is really tricky All I can suggest is that you take a brief, written record of your history, clinical findings and test results to the date of the previous appointment and have a separate section with what’s happened since then. I would try and treat it as two professionals discussing a complicated case. This is what happened up to our last meeting (summary). This is what you thought along the route (?MS, ?rheumy/NMO). Since then (new summary). So where does that leave us? What are the possibilities? Differential diagnosis? Further tests (eg evoked potentials, LP)? The big question is, “Do you believe I have an organic condition?” If the neuro does, then he shouldn’t discharge you or he should at least be able to suggest another speciality that might help. I hope it goes well. Karen x