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RRMS or Chronic Lyme Disease or Lupus

Hi

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.

Thanks in advance.

Ann

hi annelda

have you been diagnosed with ms?

your gp has set wheels in motion so you should have answers after your appointments.

glad that your ears are tumour free and working like a teenagers.

i can’t help further than this but someone will be along soon who can.

carole x

hiya ann

i dont know but i have a friend with lyme disease and cousin with lupus so can ask them for info when u get diagnosis if u want…

take care…ellie

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.

Mary

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 hope that you find answers soon.

Alison

Thanks everyone.

Pigpen - I was diagnosed with RRMS in 2010 following Neurological symptoms, an MRI scan and a positive lumbar puncture.

Chocorange and mo54 - I’ll have lots of questions so thanks.

Alison100 - these symptoms do feel different than those that have occurred due to MS. I’m lucky that my GP listens and takes me seriously I guess.

Thanks for your replies - I’ll keep you posted.

Ann

1 Like

Hi Ann.

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

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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?

Hope your tests give you some answers.

Take care.

Ann

It is possible to have MS and Lupus, I have both xxx