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M.E. Or M.S.

Hi, 

I’m new to this forum and wonder if any of you might be able to offer some thoughts on this.

In the mid 1990’s I suddenly had lots of pains in legs, arms, hands, feet etc, which moved around, dizziness, unreal fatigue and severe cognitive problems. I also had electric shock feelings down my spine. My GP sent me to neurologist who, after a very quick physical examination, said I didn’t have MS. Eventually I was diagnosed with M.E. and that has been accepted by my GP. However, over the years I’ve had additional symptoms but having been labelled with M.E. they invariably just say it’s part of M.E. 

Due to osteoporosis my spine fractured last year and at last I’ve been sent to a pain clinics. My new pain Dr is sending me for full spine MRI as she thinks my sensations/pains are not due to M.E. but to trapped nerves. I have burning sensations in both legs below the knees, jumping nerves in my left arm, insect crawling sensations down my arms, pains ‘behind’ my eyes. My dizziness has increased over the years and my balance comes and goes. My fatigue is overwhelming. My cognitive abilities have reduced even further. I struggle to find right words, forget what I’m saying, can’t think straight. I have such disabling groin pains that I can often barely walk and can only take the tiniest of steps. I’ve had problems with swallowing on and off for years but this too has become a regular occurrence. My GP is organising for me to see an ENT consultant.

I’ve been disabled for several years but used to have the occasional ‘up’ day when, with my husband, I could get out on my scooter. For the last couple of years my symptoms have increased considerably and I’m now housebound 99% of the time due to fatigue and pain. My only outings tend to be to doctors or hospital and I’m then in bed for days afterwards.

Sorry this has turned into such a long post! I’m wondering what you think? Do you think I should talk to my GP about the possibility of M.S. or do you think I’m putting 2 and 2 together and coming up with 5? Thanks so much.

I have MS

Hello Tisha

It’s difficult to advise you because you have had such a complex series of events, including osteoporosis, which does complicate matters. 

The problem with MS is that there are so many symptoms that could be attributed to it, but equally could be ME, or in fact something completely different. 

All I could suggest is that you talk to your GP. I wouldn’t ask if s/he thinks it might be MS, rather, ask if s/he thinks there might be something neurological going on and whether it would be appropriate to have a referral to a neurologist. 

Sue

Hi Sue,

Thank you for your advise. I think what you said made sense. I’ll be seeing my doctor after a couple of hospital appointments and will then ask if she thinks it might be worth seeing a neurologist. After over 20 years a few weeks won’t make much difference! Thank you.