Forum

New to forum

Hello everyone,

I’m new to the forum, and my first post. Background as follows…aged in my mid 70s, diagnosed in 1982’ never told but my late wife was informed, and advised not to tell me. Informed by embarrassed GP four years later …”you have MS, go away and read up about it”. That set a pattern of researching for myself for information, and Nadia, at the time at MS Society allayed the fears of a frightened tearful man…thank you for ever for your help.

Now in 2019, some 37 years later, I have the Neurologist telling me that he suspects I haven’t got MS after all. Scan results, whatever they tell and I have not a clue as to what, direct me to Endocrinology in August. I have all the classic symptoms, weakness and dizziness, vision problems, numbness, dreadful brain fog, and extreme fatigue, bad days, and slightly better days. Retired in my mid 40s, with wife, two little boys and a mortgage.

Kept myself busy with craft fair woodwork toys for some years, allowing me to buy better tools, and just today given up my old motorcycle, not that I used it much…just nice to see it around as a family friend. Tried it yesterday for the MOT, and no more riding for me. At least it passed, unlike me if I had such a test!,!

Has anyone had a different diagnosis, or prospective investigation after that number of years, and found they have been misdiagnosed in the first place?

Take care…Driftwood.

Hello

Welcome to the forum.

What a shock, to live with ‘MS’ for all those years, then find out it’s possibly not!

We do tend to be aware that many people are misdiagnosed with (for eg) ME or CFS when they actually have MS. Obviously there are also misdiagnoses the other way round.

The fact that you were diagnosed but not told was common I think in the dark ages (20th century!!!) The fact that your wife was told and advised not to tell you, was of course unconscionable, but probably fairly common as well. As was the eventual diagnosis you received with no support, information nor treatment.

I imagine that some people do still read the forum even after being re-diagnosed, but some perhaps don’t once told unequivocally that they don’t have MS.

I hope your new investigations go well - you never know, there might be some effective treatment for you. (Which would be a bit of a kick in the teeth after all your years of ‘MS’.)

Best of luck.

Sue

Thanks Sue for your words of encouragement, and despite the manner in which I was diagnosed, it comforts me a little to know that my treatment and information was commonplace…altogether unforgivable in the circumstances at the time. I had a brilliant GP who became a good friend, but he was bound by unwritten rules, perhaps.

I’m looking forward to further investigations, so long as they are not painful, and getting some answers. I haven’t anything to lose except a few hours…and…the hospital has a lovely cafe with good food.

My first foray on forum in order to keep the account, and will read other posts, and chip in with comments and suggestions…unless I fall asleep in the armchair and find cold coffee and a warm dog on my lap!!

Thanks again, and will stay in touch. Take care D