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ME/CFS and MS

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hapl808

Senior Member
Messages
2,117
heapsreal said:
Ranting abit, but I think there's alot of things they have to rule out first. I just wonder how they tell the difference from MS and other conditions with white matter lesions when symptoms are similar. Recently looking up MS diagnosis and the misdiagnosis rate is quite high. But seems they all have inflammation involved.
Are they all just subgroups of neuroinflammation??
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I personally think they have no clue and the distinctions are arbitrary. When none of the lesions by themselves are definitive for MS, and obviously nothing about ME/CFS is definitive… Who knows.

Just stumbled across this - had never heard of this before. I have a lot of muscular issues (can't walk anymore) but my neurological exams don't look like MS I think - probably stuff like Babinski reflex, etc. Yet it all started right after getting sick in SE Asia. I was wondering if I got some enterovirus, even though I got a polio booster the week before. In addition, I got a typhoid and hepatitis B vaccination, and then I found this:

https://www.ncbi.nlm.nih.gov/books/NBK220661/

Obviously there was enough concern that they studied Hep B vaccines and demyelination, although they claim they found no connection (although they always seem to claim that unless something is painfully obvious).

Not sure it matters since it seems like no treatment, but frustrating to feel like you did 'everything right' and maybe the vaccination itself caused my problems. I realize plenty of other people have post vaccination stuff, but it's funny that I totally forgot I got vaccinated since I got sick in SE Asia - it never occurred to me the vaccine itself could've been involved.

Ah well.
 
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lenora

Senior Member
Messages
4,926
Well.....and that's exactly what we'd like to know. Are they subgroups? That's where the research that was done on MS could have helped us years ago but, unfortunately, it wasn't passed on.

There are times when I feel that I'm just lazy or have simply become used to this way of life. Then I'll have a really bad day or more and realize that yes, it is real.

I'll have to cancel a doctor's appt. this coming week because I have no idea if I'll actually be able to attend. I think my children (both adults) are beginning to wonder just how true this is. My husband is my greatest ally and I worry about him doing too much. He'll turn 79 this year.

My arms and hands are very weak. Nerve damage to the l. hand. I recognize these symptoms from probably 35 yrs. ago & they disappeared for all this time (at one point). So now they're back again and even worse.

I guess my point is that some things can disappear for extended periods of time and we can do more; then we're faced with wondering if we're really this ill. It would be nice to have a proper diagnosis.

Bear in mind that people with MS waited every bit as long as we have for a diagnosis. I think we're all probably familiar with some victims of it. Some go downhill and suffer greatly, while others (the majority it seems) can have occasional attacks.

We just try to live in the best possible way. Yours, Lenora
 
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hapl808

Senior Member
Messages
2,117
lenora said:
There are times when I feel that I'm just lazy or have simply become used to this way of life. Then I'll have a really bad day or more and realize that yes, it is real.
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That describes my first 20 years of ME/CFS - frustration with how limited and sick I always felt, then occasional motivation that I would 'change my mindset' and push through harder, followed by worse crashes and the cycle would continue.

lenora said:
My arms and hands are very weak. Nerve damage to the l. hand. I recognize these symptoms from probably 35 yrs. ago & they disappeared for all this time (at one point). So now they're back again and even worse.
Click to expand...

Late 40's here and can no longer pick up a shopping bag or do anything that requires the smallest amount of force without hurting myself. Sometimes a full cup of tea is slightly painful to hold and I have to bend my elbow a bit so there's not too much lever force. Which all sounds ridiculous, but I guess that's life. Could be worse.

Haven't been able to stand without assistance for well over 5 years now. Not expecting that to change since any improvements stopped about 3 years ago.
 
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