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Why don’t I feel reassured??

Hello. I posted on here some 6 months ago about the neurological symptoms I was having. Primarily one sided pain and sensory symptoms on left side as well is tremors in legs when waking downstairs, involuntary movements and twitching. I initially had an mri in aug 2016 of brain and spine and it was clear. I also had nerve conduction tests and an EMG which didn’t show anything other then carpal tunnel syndrome. My nhs neuro said it’s not ms because of mri result, although it’s not impossible to have clear mri initially he told me it was unlikely.

Symptoms never went away and by summer last year I was feeling pretty low. I booked myself an appointment with an ms specialist from the National Hospital for Neurology in London. He said my symptoms should be reinvestigated and fortunately my gp agreed (she has always been certain that my problem is MS) and referred me to him on nhs. A few months later I went in to have all the tests , mri of brain and spine with and without contrast. I also had a lumbar puncture and a visual evoked potential test. 2 months later I went back in for results. I was told all the tests were negative. There is no evidence of any inflammation in your Central nervous system were the exact words. Despite this I cannot shake off the feeling that it still might be. Stupid, self indulgent, irrational…yeah maybe but it doesn’t stop me feeling it. Having looked at historical threads i can see that others have been in my position and I wonder what happened with them. The specialist told me that people with ms don’t have clear lumbar punctures yet all the literature says that’s not always the case.

Ive just read all the above back to me and I actually want to tell myself to f**k off but it doesn’t stop me from being so full of doubt.

Hello

I don’t want to tell you to f**k off. But, the results do seem that you really don’t have MS. You are right that not everyone with MS has Oligoclonal bands in their CSF, but 80-95% of people with MS do.

If you’ve had an LP, VEP, nerve conduction tests and 2 MRIs, then MS would have shown up if you had it.

But having had tests that demonstrate you don’t have MS doesn’t mean your symptoms miraculously vanish.

It seems to me that you still need answers for your symptoms. There are other diagnoses that look like MS. I assume at some point you’ve had your vitamin D and B12 levels checked? If not, perhaps your GP could do that.

There are other diagnoses that can look like MS, Functional Neurological Disorder for one, see: Symptoms - FND Hope International for more information.

I should think seeing your GP for help I’m figuring out what is going wrong with your body would be a good idea. Stop beating yourself up because you feel like you have undiagnosed MS and try to find out what is causing your problems.

Sue

You’re being awfully hard on yourself for finding it tough to muscle yourself into feeling perfectly fine! Please try to forgive yourself for being human.

If your doubts were going to vanish in a puff of logic, they would have done so when the neurologist gave you the results. If that hasn’t happened - and obviously it hasn’t - there’s no use trying to force it. My suggestion would be to try acting/thinking like a person who has simply accepted the neurologist’s reassurance. Fake it until you make it, in other words. It would be lovely if time obliged by having your current symptoms fade away, obviously! It seems to me that your best plan for sanity and a calm mind in the meantime is throwing yourself into your new role as the person whose CNS shows no evidence of inflammation. Please do not think that I am suggesting that you become false and untrue to yourself - that isn’t what I mean at all: I’m talking about very deliberately choosing to adopt a certain attitude that might - I hope - make you feel a little better and navigate these tricky waters with as light a heart as you can. Fingers crossed that time does the rest.

Good luck.

Alison

Did you want an MS diagnosis?

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Um no. I just want to feel, actually I don’t even know. I just don’t want to feel like this.

Clearly there is something wrong. It’s not surprising that as your GPs put your symptoms down to ms you believed it was ms. If I was in your position I would book an ‘extended’ appointment with your gp and discuss it with them. It is completely understandable that you want an explanation for your symptoms.

So very sorry your journey to answers is proving so challenging. Fingers crossed the answer will be something treatable.

What is very real is that you have symptoms which are affecting your life, in my opinion your gp should be focused on treating the issues you are suffering with. (Just my opinion).

any which way you look at it, it is fab that you have no lesions. That is only good.

But, it is not good that you are having issues with no answers to why.

big hugs, hope you get some answers before you implode from lack of knowing why.