Hello everyone, I am currently without a solid diagnosis, but I get IVIG for this mystery neuromuscular disorder I have... I had a question about one of my newer symptoms though...

2 years ago when I first developed symptoms when the neuro would use their reflex hammer on my thumb pad my thumb would spaz! it was the craziest thing - now, since the IVIG, it really doesnt' do that anymore..

however, I have found if I raise my foot up (usually only does this at the end of the day)..and then relax it it doesnt' relax right away - it rhythmically goes down (but i have no clonus on exam or anything like that).. I turned my foot inward (bending my ankle inward).. and relaxed it and it freaked me out - it got stuck that way for a few seconds..

I don;t have muscle cramps or anything, but i have had twitching for years.. I have negative babinski/hoffmans and all the other pathologic signs..
Thanks in advance for any insight!

Welcome Bny, good to have you here.

My bed time...more in the morning.

thanks Sally - I appreciate your time!

Sorry Bny, kind of slow here on Sundays.

Do suspect MS? Some of your symptoms could signal possible
MS, but it takes awhile and many tests to either rule it in or out.

In the meantime your Doc can treat you symptoms for a little
relief.

Please do let us know how it goes for you. We are here for you
and for me..

Thank you!!!

They did suspect MS at first.. I was 30 at age of onset- post partum.. I have had optic neuritis. .. I have had a big big work up.. One MRI showed a nonspecific lesion in the brain.. and one showed a possible demylenating lesion in the c spine (though the radiologists actually argued about this finding).. No O bands, but I did have some things in the LP that could signify MS when I was in the hospital - however I had meningitis from IVIG so they don't know how to interpret those results

I have a current diagnosis of CIDP and possible Myasthenia.. I get IVIG every few weeks which saves me.. I am not by anymeans at my baseline functioning however..

Do those symptoms sound like spacicity?? When I am at my weakest I'm not stiff I am floppy.. The only thing is that myotonia like muscle action that weirds me out (well it all does really

Do these symptoms sound like spacicity to yall?? Sorry, just curious in comparison with yalls experience.. Thanks so much in advance for any opinions or advice!

It could very well be spasticity. I've had that happen with my ankles as well as my hips. It's not very comfortable. It takes a bit to work out and then everything is fine. Do you feel any tightness in your legs when this happens?

Thanks so much for your response.. I really appreciate it!

Nope, dont have it anywhere else... and it's strange as it isn't painful at all.. it's just if I contract some muscles they have delayed relaxation.. I have negative hoffmans and babiski signs, but I do have brisk reflexes (though I always have, so don't know if this is changed from years and years ago).. Otherwise when I am weak I am a "floppy" weak.. not a stiff weak if that makes any sense!?! It's all so confusing to me!!

Sometimes it is not painful. It's just stuck. It is pretty weird. When my hip got stuck, that was painful and I spend several days with my leg stuck at a 45 degree angle. It moved some but would pull right back to that 45 degrees. It was not fun.

I understand the floppy tired, I think. You get fatigued and feel like your legs or arms are just going to give out. I do better with my legs when they get fatigued like that as the muscles seem to work harder to keep me going until I can sit and rest. They stiffen up to keep me in what ever position. My arms are a different story. They don't want to hold up, meaning, if I am brushing my hair or teeth, they tend to just fall. It's harder to keep them up, well it's mostly just my right arm. Does this sound like what you experience and what you mean?

Thank you so much for your reply!! Yes, that does sound a bit familiar.. before I had IVIG I coiuldn't lift my arm to do my hair for even a few seconds.. now it's better.. but I do still feel 90..
One thing that has become dramatically evident with my symptoms in the past 2 years is that i have MAJOR exacerbations with hormones (Premenstral mostly).. My speech gets weird, swallowing .. sometimes my tongue feels numb.. after a few days into my cycle I'm back to my new baseline.. Do you have this too?