M.E diagnosis but not so sure

I’m after some advice. What is the best way to broach the subject with a g.p about MS. A bit of history i was diagnosed with m.e almost ten years ago i was a teenager. When following all the rules its supposed to get manageble but mine has been getting progressivly worse. I fit a lot of symptoms of MS but also lots of m.e except for the fact its getting worse and worse. Now i’ve had this diagnosis for a long time the doctors seem reluctant to think its anything else. I’m wrestling with feelings that i’m a hypochondriac for thinking its something worse then m.e but at the same time the last few years i cant help but think its not right whats happening and it doesn’t fit.

Hi Anon,

I know how frustrating this can be, as I was in the same position a few years back. Unfortunately, once you’ve been ‘labelled’, it’s less effort (and cost) for GPs to assign all symptoms to that label.

If you have neurological symptoms, it’s got to be worth another try, or maybe even changing GP.

One thing I didn’t realise at the time was that some neurologists will see you privately without a GP referral (I’d have been diagnosed years ago if I’d known). Mine charged about £240 for a first appointment (£120 thereafter), but after examining me, he wrote to my GP and asked him to refer me to his NHS clinic for testing.

A good neurologist will run tests to exclude other conditions (B12 deficiency, Lupus etc.) as well as MS. Whatever the outcome, at least it will put your mind at rest, and there may be treatment & support available for anything that does show up.

Please persevere. If there’s anything I can do to help let me know.

Mags :slight_smile:

It took me 17 years from an initial ME diagnosis to get a GP to listen and they were a GP trainee. See another doc and ask to be referred. Stay strong and don’t let them fob you off. In regards to the ME ‘rules’ my son was diagnosed with ME when he was 12 and was given all the rules to follow, it made him worse too to the point where he ended up in a wheelchair and hospitalised. We ended up throwing the rule book out the window and now he manages it his way (resting when he needs to, meditiation and sometimes boom and bust for things he does not want to miss out on) He is now able to go to college and socialise with his friends. He even goes on short runs when he is able to. On the ME forum he is on a quite a few people have said the rules make them worse.

I was diagnosed with ME 23 years ago, but was never entirely convinced.

I have more recently been diagnosed with Fibromyalgia, too.

18 months ago, my health deteriorated significantly almost overnight, since which time I have been tested for MS and a host of other things. I have multiple brain lesions, but these are, apparently, non-specific and not indicative of any ‘nasyt’ neurological condition.

I recently asked my current Neuro outright if he thinks I have, or ever had, ME or Fibro and he was extremely non-committal and wouldn’t actually say! All he did was wax lyrical about how, if he had £1000 to spare, he could get my complete genetic profile done, which would then tell me exactly what conditions I am genetically predisposed to! He said in the next 5-10 years it would be proven that ME/CFS/Fibro etc are all genetically linked…or something like that! In his referral letter to the physio he said I had a lot of medical problems that had been “previously put down to ME and Fibro…”, so who knows what he actually thinks, or if he actually knows for sure!

What I’m trying to say is that some people with a collection of symptoms can be labelled with one of these conditions, and this diagnosis then clouds future medical decisions, as everything is put down to them. If you feel there is something else going on, then please be strong and pursue it.

I now have another diagnosis to add to my ever-growing collection, but am still not convinced this explains everything, so am determined to keep fighting. It is exhausting and frustrating, but I can’t just sit back and wonder if there is something going on that could be treated.

Be strong, and good luck xxxxxx (PM me if you want to chat xxxx)

H, how long is it since you saw anyone about your ME?

10 years is a long time and if the progression is worrying you, I dont see why any GP would think badly of you for asking if the old label still fits!

I wouldnt suggest it could be MS, as GPs dont usually like their patients trying to be the doctor.if you get what I mean hun.

luv Pollx