Worried my M.E is actually M.S and new symptoms.


im not sure where to start, it’s all a bit of a long story, and in the back of my head I’m worried I’m just being a hypochondriac.

I am 47, when I was 20 I was diagnosed with “probably M.E”, and I’ve lived with that and lots of mild nuisance and slightly distressing symptoms, on an off ever since. I’ve been lucky as it’s been mainly in remisssion…I had one bad bout of pain in about 2001, and went to the GP, but since then I’ve been lots better on the pain and fatigue front and I have put this down to me having learnt how to pace myself and what exacerbates it.

skipping forward to now, over the last year or more I have felt gradually but steadily not well in non-specific ways. I also started having a pain in my lower right pelvis, initial sharp stabbing, but gradually changing to a sore tenderness. I was convinced it was my ovary but scans and blood test have been fine. The GP suggested irritable bowel but it’s fel very gynae related. The pain continued, I came off my HRT in case that was causing it, but now feel like I am having bowel issues, in that I feel constipated and slightly as though that side of my bowel is operating sluggishly. The feeling of tenderness and pressure eases if I wee or poo but doesn’t totally go. It also feels sore around my hip on the same side, and also in my coccyx area. I’ve been referred for a colonoscopy, another gynae internal scan, and blood tests.

The reason I’ve ended up posting here is that I’ve also over recent weeks had some isolated strange symptoms that come and go very briefly. For example, I had an eye twitch in my left eyelid daily for 3 weeks. I’ve had occasional incidents of felling like someone has dropped cold water drips on my arm, I’ve had tingly numb top teeth/gums, and nose. I’ve also had a feeling of looking through slight mist and at my last eye test they said I was at risk of glaucoma. I’ve had tinnitus in one ear for two weeks now, and can’t ease it - the pharmacist said they advise to speak the GP about tinnitus in case of underlying conditions and asked if I have been dizzy. I said no, but afterward remembered that in August I woke in the night with extreme vertigo out of the blue - I had to hold onto the wall to creep my way to the bathroom for a wee, and then couldn’t sleep because of the sensation. The next day I felt very nauseous but 24 hours later I was fine. I’ve had a feeling like a hot water bottle has been put on my leg when there’s nothing there.

im not sure whether to be concerned or not, and whether to mention these th8gs to my GP at all - each of these feeling symptoms have been SO brief and feeling…I’ve put them down to my M.E or other things - needing new glasses, or stress, or the menopause etc, the skin sensations I thought was connected to my back being sore, or due to sitting badly. The recent vertigo I put down to having swum in a river a week earlier. He’s bound to ask how long have I had these things , but the problem is because of my M.E the answer will be “all my adult life”.

looking back I have always had the following : bouts of brain fog, poor stamina, occasional incidents of muscles twitching independently, vertigo, light sensitivity, feeling a bit wobbly on my feet. Occasions where my right foot seems to swing in sideways while I walk and then it goes again and I forget it happened.

is it possible I could have had VERY mild MS all these years and not known? and now getting new symptoms? Do I mention any of this to my Dr, or do I just wait and see. I’ve been to the GP so rarely about my ME I’m worried about being dismissed as a hypochondriac as he won’t even likely know I have an ME diagnosis as he wasn’t my doctor at the time.
could the bowel/pelvic pain be MS?

I don’t want it to automatically all be put down to ME when the diagnosis was 27 years ago, but I don’t want to be a hypochondriac either

I’m so sorry for the long post, but I’m feeling run down, and glum, and not sure what to think.


Hi Goldfinch

speak to your GP and ask to be referred back to the consultant who diagnosed you with ME.

Hopefully s/he will arrange more tests, especially an MRI.

good luck

carole x

Hi, with it being such a long time ago when you were diagnosed with ME, it is possible it could be something else…whether that be MS or ?

ME and MS do cross over with their similar symptoms.

I think a referral to a neuro is not too much to ask.


Thanks for your replies, it’s appreciated. I will see how the blood tests come back and then take it from there. I knkw you’re right and only a doctor can know how to take it forward, I think it’s possible I am over-worrying about approaching them because over the years I’ve had people be very nasty about M.E and talk to me as though I have made it up . I was diagnosed in the 1990’s when it was still viewed as psychosomatic or yuppy flu, which is one of the reasons I didn’t return to the GP at times when it was relapsing - hence there will be no mention of it on my medical records for the last 20 years. I’m worried the doctor will be totally baffled that I’ve never complained about these symptoms before, and therefore dismissive. In reality I’ve had the symptoms all,y life intermittently. In my youth I thought I just had to put up with them because I had been to,d there was no treatment. And now got some new ones which may of course just be coincidence and caused by stress or minor conditions/ailments. It’s hard to know how to begin with my GP.
Anyhow, that’s my problem to figure out not yours so I will sign off now.
thank you for taking the time to reply