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MS symptoms - no diagnosis - no help either

Hi all

Just wondered if anyone has some advice - I have had MS symptoms now for 4-5 years, since I lost sight in one of my eyes and had problems with my legs. At the time I went through all manner of stroke/neuro/optical tests and while I have lesions on my brain, the consultants thought these may have been as a result of a heart attack some 5 years before. So they weren’t prepared to say this is MS and have basically offered no practical help or any other ideas for what this might be. No help or idea what caused sight loss and the problems with my balance and legs. Progressively things have become worse with a whole range of symptoms - memory loss; balance and mobility problems; bladder and bowel; not feeling temperature; fatigue; not able to walk more than a few paces; falling; not able to use stairs; loss of function in right hand. And in the last 3 weeks, sight deteriorating in my “good eye” somewhat quickly.

My GP is reluctant to refer me to neurologist again, said I have to deal with each of the symptoms separately. Finally got the referral from GP for appointment with neurology department at RVI in Newcastle - made the appointment and now the neuro dept at the RVI have deleted the appointment as I am apparently not unwell enough for the consultation. I am not sure they like to be in a situation of having been asked to give a second opinion. Back to the GP on Monday and back to the drawing board. Am starting to feel that the GP thinks I am making this up.

In the meantime, in an effort to sort out symptoms individually, had eye tests at two opticians - no inflamation or nerve damage, no cattaracts or any other issue the the opticians can find. One has now written to my GP recommending a referral to an neuro-opthamoligist. Just waiting to see if that does result in a referral - really hoping this will finally lead to an appointment with a consultant.

I was told 4 years ago that this isn’t MS, but can’t seem to get any support for what this might be. No support re sight loss - magnifiers don’t make any difference, apparently my prescription at eye test has not changed according to the optician. But I can’t see to read and am struggling to use my laptop with the help of a magnifier and its getting worse.

Am thinking of changing GP in the hope that someone new will listen. But also considering a private appointment with a consultant.

Does anyone have any advice as to how to get help ? It’s not that I want this to be MS, but even if it isn’t, no-one seems to want to look for other causes.

Ok This is a hard one, if you feel that you should see a neurologist your GP should put you forward. If he doesn’t, try another GP in the surgery or change the doctor. If the hospital deleted your appointment you should insist a new one, you have something and it needs sorting out whether you have ms or not you have had to cope with ill health far to long on your own. There are far more ill people then you at hospital so it’s a bit silly saying that you are too sick to be in hospital. My dad went in an ambulance on a stretcher to hospital and he was dying with cancer they wanted him to stay in till the end. I hope that you get what you need all the best Kay