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Neuro said not MS? Help

Hi everyone I had my long awaited first neuro apt today and I was shocked at how quickly he ran through everything and just did a few tests like looked at my eyes I had to push his hands and touch my nose etc he told me he does not think it’s neurological and that I probably have fibro. I was quite surprised to not even be offered an MRI, I explained to him I was no longer having a flare up and that things were very different a few months ago. My question is should I just let him discharge me? Is there anything I can do? Is it worth me paying for a private brain MRI scan at £400 which I don’t have? Before I get lumped in the CFS/ fibro group I wanted to be sure it wasn’t MS. Here are my symptoms:

Fatigue - feel exhausted throughout the day and cannot do what I used to do
Muscles tire easily, spasms, stiffness
Numbness, tingling, nerve pains - mainly hands and feet
Hearing loss, tinnitus, fullness in ear
Dizzy when standing up
Forgetful
Heat intolerance
Extreme itchiness of legs mainly at night
Sometimes get shaky hands
Squeezing feeling around stomach and stomach spasms
Back pain and sciatica
Hip pain and knee pain
During a flare doing everything extremely slowly
Decreased vaginal lubrication and sensation, loss of libido
Choking and gasping for air during sleep
Headaches
Sometimes oversensitive skin
Stomach problems, bloating, gas, diarrhoea
Morning stiffness or when sitting or not moving for periods of time
Restless legs
TMJ
Easily short of breath
Takes a very long time to recover from exercise

thank you x

Hello Greentea1.

Il start by saying I’m always conscious of giving advice as one person saying you should absolutely do this, is another person saying absolutely DONT do that. However I read your post with interest. Reading your symptom list is like reading my own and I’m quite surprised your neuro didn’t at the very least refer you for a brain MRI.

It was my GP that referred me for my brain and spine MRI and by the time I saw the neurologist the result was in (normal). My physical exam was also normal and my neuro said there is no way I could have my level of sensory and pain symptoms without evidence on an MRI, which led to the conclusion that my symptoms were not caused by MS. My MRI was over a year ago and I would like another one, if my neuro at my next review won’t refer me for one I will pay for one privately.

In your case I think you should go back to your GP and talk about your concerns and perhaps they will agree to an MRI referral. Failing that I would pay privately for one without hesitation. If it comes back clean then that’s great and perhaps your GP will consider a referral to rheumatology for you, who deal with fibro etc. If it comes back with any abnormalities then you can take this to your next neuro appointment, that’s if you’ve not been discharged already and go from there. I really wish you the best of luck as like I say reading your symptoms, it’s uncanny how similar they are to mine. I am sat here now with a hot water bottle pressed on my hip because of the pain. Let us know what you decide.

Hi

Well, obviously, as you probably know, your list of symptoms could point towards MS, and it could just as easily point towards another diagnosis, as your neurologist has suggested, maybe fibromyalgia.

But I do understand that you clearly feel that there is a neurological basis to your symptoms. And that further neurological testing is needed, even if it’s simply to put your mind at rest.

If you could afford a private MRI, you’d still have to pay for a neurological consultation in order to have the imaging read by a specialist. And it sounds like that would be a lot of money to spend which you just don’t have.

So, one option is for you to see your GP and ask for their help in having what you believe are neurological symptoms explored fully before being referred to a rheumatologist. You may want to wait for the neurologists report to be sent to the GP before doing this (a copy will be sent to you - you can always phone the neuros secretary to ask if / when it will be sent). This way, the GP will have all the facts at their disposal before you see them.

I do hope you get to a conclusive diagnosis, one that you feel has been made with all the facts fully explored.

Sue