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Newly Diagnosed-but something doesn't seem right

New diagnosis and before diagnosis
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#1

Hi All!

This is my first time posting here but like my many other people I’ve spent many years reading other peoples stories on here and they’ve been so useful over my journey and it’s the fact that I know so many people here are so knowledgeable and ready to help that I thought I’d come here for some honest advice.

6 years ago, after years of fatigue and some strange episodes of facial palsy, I was admitted to hospital with what everyone thought was a stroke. I was mostly recovered 24 hours later, but my MRI showed 3 lesions and my consultant neuro put the episode down as a cis but diagnosed silent (no headache) hemiplegic migraines and I was given topirimate.

For the next 5 years under my old GP, my fatigue continued to worsen, and despite my medication, I continued to have stroke like symptoms. In fact, they were taking longer to resolve to the point where the right side of my face is permanently numb, so is my left arm,I constantly struggle with words, brain fog, all the fun stuff!

After a move to a new area and a new GP, I explained that I was concerned that my symptoms were totally inconsistent with my diagnosis and I had further tests, the upshot being a diagnosis of MS on Monday morning.

And here is where I would like peoples expertise. Something about my diagnosis does not ring true to me. Although I have many symptoms consistent with MS, I did not have any o bands in my LP results. I have more lesions on my MRI but these could be as a result of my migraines as far as I’m aware. I also had a vitamin B12 level of 121 before beginning topirimate, which is 1 point above protocol for treatment in my health authority area but I know to be very low and it has never been tested since, which just seems a daft oversight. I can’t help but wonder if my problems could be something much more simple than they currently seem?

Any musings gratefully taken on board!

#2

Hi Nicki

Well, 5% of people with MS don’t have O bands in their CSF, so the fact that you have none doesn’t rule out an MS diagnosis.

You are right that sometimes a deficiency of B12 can mimic MS like symptoms, so it’s worth getting yours checked again. Many people with MS take a supplement of B12 anyway (me included).

Some people are mistakenly diagnosed with MS of course, but generally neurologists can see where lesions are in the brain and CSF as well as the nature of those lesions and tell whether they are typical for MS.

In addition, many of your symptoms do sound as though they could be caused by MS. Usually, people on this forum list symptoms and ask us whether this sounds like MS? You’ve done the opposite, taken an MS diagnosis, listed symptoms and asked, could it be something else? And of course, many symptoms of MS are also present in other diagnoses.

So, by all means have your B12 checked and double check with the neurologist that they are certain it is MS given your migraines and your feeling that it just doesn’t ‘fit’.

It would definitely be a good thing if it were not MS, but something more straightforward, and hopefully easily fixable.

Let us know.

Sue

#3

Hi Nicki,

I’m 100% with Sue; ask your GP about CYTAMEN vitamin B complex injections say once per month. If you have a low vitamin B count it will sort this out.

I just like to add this about APS; a complaint that mimics MS symptoms but also can cause bad migraines; but your migraines do not appear as a headache, but it may be worth testing for it although they do say it is NOT necessary to have all the symptoms to be diagnosed with APS. See http://www.aps-support.org.uk/

Good luck

George