Referred for MRI, bit confused.

Hi. After years of being diagnosed with M.E I was at last referred to an M.E clinic. They then referred me to a neurologist. He did a physical exam, all with me lying down. He said because I felt the cold fork thing warmer on one side and because of some of the symptoms I’d described, he was referring me for an MRI. He also said he could just as easily be writing to say I was fine. So do you think he suspects anything, or is just keeping M.E clinic happy? Not sure how to feel. If it is MS , is MRI likely to show this, even though I’ve been having a well phase for a while, apart from very tired. Have had symptoms on and off for years, tingling, muscle tension with burning down one side (comes and goes for weeks/months)plus mamy other on/off symptoms. Any thoughts would be appreciated. Thanks x

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hi daisy

MRIs can show lesions - active or old ones.

really i’m not qualified to say whether you will get an ms diagnosis.

try to take the MRI in your stride and don’t get stressed about it.

good luck

carole x

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Thanks for your reply Carole. That’s interesting to know that old lesions will show, if I have any. I’m trying not to stress. Torn between feeling like I’ll probably be wasting everyone’s time as they’ll be nothing that shows, and scared that something will show, and almost wanting something to show to make sense of it all. I just have to think what will be will be x

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Hi Daisy

i had my MS diagnosed by MRI back in April, but it was a relief for me as I’ve been having problems on and off for 20 years! I agree that it is what it is and having a diagnosis allows for the appropriate treatment. None of us want this evil condition but treatment has come a long way and.knowing what you’re dealing which makes the battle more manageable x

Julia

Not a lot of people seem to realise and that is including doctors that M.E. is actually classed as a neurological disorder. It is caused by a virus of some sort.

My daughter has M.E. I have M.S. There is a difference in our disease paths and the way they present themselves. Hers started after she had Pneumonia.

She also had MRI of brain and they found lesions. They said they were to be expected but were not demylinating.

M.E. is one of the most misunderstood diseases of the century.

One set of doctors in the STATES (usa) actually think its a BENIGN form of M.S. It doesnt have the progressive issues that M.S. has.

My daughter is now in near full recovery but it has taken a long time to get her there. She still however, knows if she overdoes it.

So its good you are having an MRI, and that a neurologist is looking outside the box.

The difference with me with my M.S. is I can do loads of things i am not in bed all day like she was, but i have a different type of fatigue. Mine comes on later and gets worse, where hers was constant she would simply not be able to get out of bed.

I know a lot of people with MS find that but its hard to describe, i can see differences in us both, so can she.

See what the MRI comes up with. MS lesions actually can heal themselves, even though they may leave scar tissue behind not all of them show on MRI. It depends where they are.

This is my favorite place for M.E. information.

http://www.thegracecharityforme.org/what.asp

xx

Took me TEN YEARS to get diagnosed with MS. I was never considered to have M.E. from the get go, as i had ON to start, and ON to finish with lesions in between lol.

I agree once i knew I had PPMS I knew what i was dealing with, although to be fair i knew all along. The label hasnt changed me at all, if anything i seem to have gotten worse…

Like you Julia, i have had ongoing problems for about 20 years. xx

Hi Crazy chick

Its good to see that you have a handle on things. Was doesn’t help for me is that I’m a nurse and come across people with this condition from time to time. I’ve also had breast cancer, aged 42, and it can be awful to see people dying from that. However, I am able to distance myself from such things as they are my patients and their problems are unique to them.

Julia

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Hi Crazy chick

Its good to see that you have a handle on things. Was doesn’t help for me is that I’m a nurse and come across people with this condition from time to time. I’ve also had breast cancer, aged 42, and it can be awful to see people dying from that. However, I am able to distance myself from such things as they are my patients and their problems are unique to them.

Julia

Hi, thank you very much for your replies. I was diagnosed with ME back in the 90s. Not a lot was known then and I was never referred to a specialist. This past year I suddenly thought “I really should be getting help for this.” So went to a different doc and explained. She couldn’t believe I hadn’t seen a specialist and referred me straight away to ME clinic, which I hadn’t realised existed! They went through my symptoms to try and be sure the ME diagnosis was correct. They felt it all fitted except a couple of symptoms, so referred me to a neurologist. He then suggested the MRIs. I agreed Crazy Chick ME is so misunderstood. I have felt I have to hide it from people and I never expect the medical profession to take it seriously because of previous attitudes, so it’s a shock when they do. I feel I’m somewhere in between you and your daughter. When I was first ill I was in bed all the time. Now I have good days and bad days, good weeks and bad weeks. Maybe it’s possible I have recovered from me and now have something else like ms. Since ME I have also been diagnosed with hypothyroidism, which although being treated it seems a lot of people still feel unwell, although again this isn’t treated seriously by the medical profession, as long as your “numbers” are ok. Anyway, thank you both very much. Hope you are as well as poss. I’ll let you know how MRI goes in sept x

P.S I was only 15 when diagnosed with ME x

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Weirdly enough my daughter has hypothyroidism too hun. Athough her M.E. is much better she still does have the odd days which she calls her ME days lol.

The trouble with M.E. and M.S. they do have a lot of symptoms that overlap. There is another brilliant web site about M.E. called hummingbird have you seen it. They really explain about it all and how the 2 illnesses are often misdiagnosed.

I dont think you ever fully recover from M.E. its always there in the background. xxx Good luck on your MRI. I really hope it gives you answers, but dont give up it took me TEN years to get my diagnosis, i knew it was MS.

Thank you. I do wonder how much hypothyroidism is linked with ME, they so often go together. Glad your daughter has improved. I am better than I was too, I think you’re right that ME doesn’t ever go completely away.Yes have heard of the hummingbird thanks, sadly the founder passed away in June, the reason hasn’t been stated. I know she found it very difficult that ME had such a different reputation to MS, although both so similar. Thank you for the other site recommendations too, I will take a look xx

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