Possibly MS?

New diagnosis and before diagnosis
1

This might come across as being a very long post but I need to explain quite a bit,

About 6 years ago, I had a spell of passing out, extreme fatigue, headaches dizzyness and when I went to see my doctor they made me have various tests for my heart, I had ECG’s a 24 hr monitor on while I went about my normal day, I was taken off of anti depresants without being weaned off of them like I’ve now learnt I should of been so I put it down to this, the doctor mentioned it could be ME/CFS and I just learned to live with it.

Every day I wake up and something hurts, it could be my legs, my arms, I wake up with constant headaches and the last few months Ive woken up with really extreme dizzyness and my lack of coordination is becoming very obvious not just to me but to people around me, I have this tingling pins and needles sensation throughout my arms and legs, I had blood tests done and they said that everything was normal apart from I have high hemoglobin, over the last year my right foot has given me trouble, its like someone is clamping down on the top of it and since this dizzyness it seems to of gotten worse.

I went to my Dr who said it was vertigo and gave me tablets which made me feel a lot worse, I’ve since been back and she said she had to rule of the vertigo and that she would fast track me to a Neurologist because of my high hemoglobin and because the whole feeling of dizzyness and tingling is getting worse, this has since fallen through and I’ve been chasing up my GP and been told I’ll have to wait at least a month for an appointment with a NHS nerologist as I dont fit the criteria for a fast track appointment.

My boss suggested I use my personal health insurance which I have done, I saw a neuologist who done various balance tests with me, checked if I could feel vibration/ coldness, when I mentioned I have been told I have high hemoglobin he suggested I have an MRI and EMG test which were performed a few days later, I’m now waiting for those results, My personal cover from work has covered my MRI and EMG test and 2 appointments with this neurologist and I’m not in the financial position to be able to carry on personal health care so I will need to go back to the NHS and hopefully they will be able to sort out whatever this MRI or EMG test picks up.

The MRI scan was on my head/neck and spine and the EMG test the doctor told me I had quite bad nerve damage in my foot, Does this sound like It could be MS?

Has anyone experienced private care and carried it on to NHS? Im constantly feeling ill and its really affecting every aspect of my life, my bosses are being really understanding and telling me to get this sorted out for myself yet I seem to be hitting a brick wall when it comes to my doctor and having something done about it, I’m trying to explain to them its not a minor thing its taking over my life, having constant pain and dizzyness is not something I can deal with long term, I try painkillers and nothing even touches the pain, the dizzyness makes me feel unsafe going out by myself and I have to rely on others to be there for me and where I’m normally very independent this is really getting me down.

Sorry for the long post, any thoughts of experiences please do comment

Thanks

2

Yes - quite a few of us on here (me included) started with private neurologist consultation(s) and MRIs, lumbar puncture etc, and then transferred to the neurologist’s NHS list once we had a dx. As far as that goes, you’re on a well-trodden path (although I hope that it does not, in your case, lead you to a dx of MS or anything else horrid, obviously!) But your neurologist will know the drill, and so will your private health provider, so you shouldn’t need to worry about how it all fits together - that should all just happen (if it needs to.) As you are probably aware, private health cover covers a person up to and including dx of something chronic like MS, but you’re on your own thereafter - they do not provide general ongoing cover for such conditions.

Good luck. I hope that you get to the bottom of your problems soon.

Alison

3

I’m doing the same, using private insurance, my neurologist said he will take me on then under NHS when it runs out, but I’m guessing it’s then a little easier once there’s a diagnosis?

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Hello, Ive had my MRI and EMG test, the emg showed nerve damage in my foot but the MRI showed my brain as normal, the neurologist told me he predicted MS but because I also get headaches he cant diagnose this as MS so Im back with my doctor doing more blood tests because he doesnt know what it could be either, my doctor has told me if these tests dont show up anything then he is going to diagnose CFS and send me on to a CFS clinic which is basically in his own words what they do when they cant find a diagnosis or anything when the patient is still complaining of feeling ill, on a plus note Ive got my NHS neurologist appointment though for next month so Im going to explain whats happened and ask for a second opinion, Ive looked up triggers for headaches and have completely cut out caffeine which I have noticed a big difference in my headaches, feel so helpless for the last few months Ive felt worse than ever yet asking the doctor for something is like getting blood from a stone.