How many people on here have a diagnoses of MS but was first diagnosed with M.E. Any one got both? Still getting test done but my neurologist has said let’s call it M.E for now. What do I say to that? I have brain and spine lesions and multiple symptoms for 13 years. My head feels like it’s going to explode. Lina
hi lina you dont get spine lesions with M.E.
My daughter has M.E. is actually in remission from being bed ridden for a year, we got her doing things slowly i bought her a young colt and now after years of hard work she is riding again, and runs her own business.
Her symptoms are not like mine. She just crashed was having vertigo where she would drop to floor, she was getting over penumonia. had personal issues and i think her body just shut down. she could barely move to eat, the kids cared for her, and she had a careworker. she just slept the days away. no tests were positive apart from one bran scan which show lesion but was said not demylinating.
as she got better she had to pace as just doing something would exhaust her and she had to catch her breath. like i said with therepy and pace and her horse she got better and is now in remission.
althought the symptoms are simlar like i said we are nothing alike.
Thanks Crazy Chick. I remember you mention before about the lesions. Lina
Hi Lina,
I had a couple of diagnoses before the MS was finally declared… It’s your diabetes then ME of nearly forgot the transverse myelitis then drum roll please MS 
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Had I been in Europe, I would probably have been like you (no lesions showed up for decades), but the US doesn’t recognize ME.
Hi NorasMom, I have read alot about M.E. Why is it not recognised in the US? There is alot they don’t know about M.E and there has been so much controversy over M.E for years. It is a neurological condition. Lina
Horse mad, that crazy how frustrating. How long did it take? Did you see lots of neurologist? What advice can you give me? I am losing hope. Lina
Hi Lina ,
Are you based in the UK ? if you suspect that your diagnosis is more like MS than ME then you are entitled to a second opinion , where I imagine you’d be referred to a different neurologist for them to investigate your concerns & issues and then they will either confirm the original ME diagnosis or provide you with a different diagnosis or medical perspective. I think the first step in this instance would be to speak to your GP about organising a second opinion .
Good luck with everything ,
Lina, I forget what all I’ve read about it, because I first checked into it a couple decades ago, but in the US they believe it’s not a legitimate illness. I think more doctors are diagnosing Chronic Fatigue Syndrome now (another, albeit shallow, name) but it’s still not considered a “real” disorder needing medical care or causing disability. That causes a lot of problems for the people who have it.
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the WHO have classed it is a neurological disorder. I read some years ago now some guys in holland i think who were looking at M.E. and had decided it could be a form of BENIGN MS. so it would never turn into full blown MS but was benign. which kind of makes sense as so many of the issues are similar to MS. BEING benign no lesions, but now i believe this is what FND is going to turn into. so many changes over the years.
M.E. is nasty. there have been cases contributed to a death with M.E. actually certified.
I think its time the world medical people got together worked together to find out what on earth is going on, as there are way too many SICK PEOPLE about all suffering with the same variant things. It cant all be coincidence. now we have fibromyalgia morphing into a neurological issue. its nuts. I think we have some sort of environmental crisis going on.
I can honestly say i know more sick people now then healthy. in the last 30 years.
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Have you seen a documentary called Unrest? People are suffering. The doctors turn a blind eye to the unknown. There are so many illnesses out there that they don’t know about, that’s why research is very important. I read the NICE guidlines on M.E/CFS and it’s frustraiting. The guidlines are currently being reviewed and rightly so. This is recognised by the World Health Organisation as a neurological condition I think medical professionals need to be educated about M.E/CFS because it’s real. Lina
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All diagnoses were made via various GP’s and HCP’s the TM was a provisional diagnoses by a neurologist whilst scans and other tests were done. It took 20 years from start to finish. The neurologist was fab though as soon as I was referred to him he did get moving and sort things out.
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Its awful the way we are thrown hither and thither. The Walton Centre in Liverpool have some great neuros....still waiting for out patient appointment, following last months stay there. I rang yesterday to ask if the appointment was imminent. The neuro is still looking at all the tests to ensure he`s got the dx of Spinal MS right…oh no…don’t…
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Thanks.
20 years! I better shut up then.
I was diagnosed with M.E about 20 years ago after being very unwell for about 3 years. I am currently being investigated for MS. I initially though that my current symptoms could be a relapse of the M.E or that i may have been misdiagnosed 20 years ago as i was never sent for MRI. However, there are some differences in how i am now compared to how i was then mainly have double vision and tingling that i never had previously. Additionally i find now i wake up fatigued whereas i would before fatigue would have been made worse by excursion. I am awaiting MRI results currently, know there are 3 nonspecific lesions but need clarification as to whether this could be related to previous M.E or possible MS now.
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Hi. I have just been on the hummingbird website and it is interesting to see the similarities between ME and MS. As most of the symptoms are identical and as ME was first diagnosed as a type of MS they should both be classed as MS. I know a few people who have ME and they are definatley not treated the same way as people with MS. Most of them were told by doctors that they were making the symptoms up and had to see several doctors before they were taken seriously.
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Hi, I was dx with ME in 2006. Then saw an ME specialist who sent me for an MRI. Showed lesions. Finally they did lumbar puncture in 2008 and dx MS. Then in 2010 dx PPMS.
That seemed long enough… but obviously it was quick compared to others! Actually I know people with dx ME who are much more unwell than I am with PPMS. So the names really don’t mean that much. It’s how the individual is affected.
However I think the ‘public at large’ are very unsympathetic about ME. Once I was dx with MS people were far more sympathetic and yet my symptoms hadn’t changed at all. The power of a name!
Pat x
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Hi Snow Leopard. The way people with ME are treated is the main reason why I think ME should be classed as MS. I was told by my doctor that I was making it up and it was all in my head. When I went to see another dr he did diagnose me with ME, it is definatley not treated a seriously! I think the main problem is that people don’t really understand how serious ME is. This was not helped by the stupid “yuppie flu” label that was used to describe ME. Like you say the symptoms are almost identical.
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