MS or something else

New diagnosis and before diagnosis
1

Hello,

I am new to the forum and trying to find out what is wrong with my wife. Doctors seem very slow to diagnose but MS seems a possibility and hoping if you guys could tell me if it sounds possible.

Around 7-8 monthsago my wife started having problems, first she started to dizzy spells at work and it went on for around 2 weeks, GP put her on some medication and it went for a while. Then last December my wife started getting swollen neck lymph nodes and sort throat, is put down to bacterial tonsillitis and after 4 courses of antibiotics it did not seem to clear after 3-4 weeks. Went back to the GP, and they said tonsillitis had gone but now she has the flu virus and was put tamiflu and it seem to easy a bit. Then she started getting severe headaches along with neck pain, tingling pains in arms and hands. She was admitted to the hospital and put on antibiotics and meningitis was suspected. After 12 nights she was discharged, feeling better but still with swollen lymph nodes in the neck, put on very strong dose of antibiotics. During this visit she had CT scan, chest x ray, MRI. MRI showed a small lesion on the brain but they said nothing to worry about and viral meningitis was “probably” to blame. Also had 2 lumbar punctures which were not conclusive for meningitis.

10 days later severe headache, pain in left eye, neck ache, fever and pains all over and general un wellness. Ambulance called admitted again. All the same symptoms and return of severe dizziness, headaches. Also for the last 6mth she has been saying her hair has been fallen out when brushing it.

My wife is still in hospital, she has been tested for every kind of infectious disease including TB all came back negative. Liver, lungs, kidneys, heart all working well. Had goodness knows how many blood tests nothing showing until they found a blood showing that she has a problem with her immune system but was inconclusive and more tests needed doing. She had a biopsy this morning as now the rheumotoligist wanted it as they now think this is where the issue lies.

Sorry for the long post, but want to get some idea of what to expect. A number of auto-immune diseases were mentioned as possibilities but MS seems the closet along with lupus with her symptoms.

Thanks guys

2

Hello Phileas Blimey, what a hell you and your wife have been living. It sounds like you’ve both had a dreadful time over the last year. It would be silly and pointless for anyone of us to say, ‘oh yes that sounds like blah, or whatever’. It may be MS, but maybe Lupus, or possibly something else so far unmentioned. I’d say that the LP and the MRI scan(s) would give the neurologists a good idea is it was MS. But clearly they’re either still unsure about what’s causing it, or are still flummoxed by it at present. All I can say is I truly hope the doctors figure it out and / or tell you and Mrs Phileas what is causing the symptoms very soon. You have my sympathy. Please let us know when you get a result. Or feel free to keep chatting on here while the diagnostic process is going on. You must be feeling very lonely and desperately worried. Sometimes it’s actually harder to be the partner of the ill person. (I am fortunate in having my very own OH who is pretty marvellous and I know there have been times when he’s been maybe not quite where you are, but very worried all the same.) Sue

3

Thanks Sue. I am trying to prepare myself for the worse to ease the shock of what it might be. I think it makes me feel a bit better knowing what the possibilities are and knowing a bit about of some of these diseases. MS seems to be a possibility but was not sure what tests the docs can do to know if MS was the cause. Anyway, hopefully we will find out soon, at least they can work on the correct treatment once they know.

Oh, do you know a person’s inflammation marker (blood test) would be affected if MS was possibly the cause?

4

Hi there,

MS isn’t diagnosed by a single test. It is a combination of things over time and in different parts of the body that provides the neurologist with the confidence to make that diagnosis.

I can only repeat what Sue has said, that you are more than welcome to share your fears and worries on this Forum, because we understand what an awful place Limbo is while you’re waiting for the answer.

Best wishes,

Anthony

5

Thanks Anthony.

Hopefully we will find out soon, I think because my wife has so many symptoms, it makes it difficult to narrow it down and it is a matter of ruling out diseases one at a time.