Having a few symptoms that don’t fit ‘typical’ RRMS. The beginnings of arthritis (both ankles simultaneously), constant high temperature / sweating, even more fatigue, strange ear pressure etc. etc.
I’ve been putting it all down to MS until a colleague told me about her brother-in-law who had a small tumour in his ear and the first symptom was this weird pressure. Saw GP, referred to ENT and clear Rheumatoid arthritis blood test. Ear tubes checked - all clear. Hearing as good as a teenager’s! He ordered a contrast MRI which showed no tumour (phew) but something called Normal Pressure Hydrocephalus (nasty, can be linked to dementia / Parkinson’s…).
Have been searching symptoms and main options seem to be Chronic Lyme Disease (tick bite in 2005) or Lupus. Have now been referred to both Rheumatology and Neurology to try to find out what’s going on.
Sorry for long post. Just really want to know if anyone has come across anything like this before or has any thoughts.
My sister has SLE Lupus so will get back to you if you are diagnosed with it. Also my brother and I both have MS. I don’t really know anything about Lyme disease. Hope you get diagnosis soon.
It is good that you are getting all this investigated. It is all too easy to assume, once you have an MS dx, that everything that happens thereafter must be MS. This can lead ot all kinds of unlikely symptoms being forced like an ugly sister’s foot into an MS-shaped slipper, so to speak. Those symptoms you describe do not shout RRMS! to me, certainly. Have you had MS for a while now? If so, you’ll be a better judge than most people of what is and what isn’t. Even if a symptom is a completely new one, MS things tend to have an MS feel about them, or that has been my experience. If only because they feel so weirdly strange that they are impossible to describe - except that they feel like the kind of trick that MS would play! If that is not what these new things feel like, then you are surely doing the right thing to have them looked at with an open mind and a clear eye.
I have had all of the above symptoms for the last few months.Also my memory is shockingly bad for the last few weeks. This is probably down to a lack of sleep. I wasn’t sure if it was MS or side effects to medication. I had a couple of nights of fitting. One night it lasted for about four/five hours when I couldn’t stop my whole body from moving. I have been to see my g.p, who is doing blood tests for everything. He thinks this isn’t MS or side effects of medcation
19neils68 - sorry to hear that you are having the same horrible symptoms. Don’t like the sound of the fits. Do you think that could be connected to the hydrocephalus? Have you ever noticed a tick bite?