NeuroTalk Support Groups - Dr Apt and spasm

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Dr Apt and spasm (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/76396-dr-apt-spasm.html)

Hi Kelly,

Thank you so much for your kind words - they mean a lot!:hug:

The spasms that you are describing sound a lot like mine - my leg will jerk un-controlably all of a sudden and my mum said sometimes it looks as though I am about to kick her!! The spasms that you are describing sound a lot like the Myoclonic Spasms I have so I would definitely mention it to your Doctor and see what he/she says ... you are probably best seeing a Neurologist as they are the Doctors that have helped me the most and seem to know more about the spasms.

My Neurologists explained to me that the Myoclonic Spasms are caused by something wrong in the brain - like their is a fault in the nerves and white matter in the brain or something like that I think he said, I can't remember exactly! It scared me quite a lot but he explained that although they are REALLY frustrating, they are NOT fatal although you can develop serious muscle atrophy etc etc.

My big toe on my RSD leg curls under me a lot also - it's so annoying as one minute it can be "normal" and the next it is pointing up and in the next breathe, it is fluttering up and down and it almost looks like I have dislocated it!:eek:

I have two sorts of spams - I have the Dystonia which causes my leg to lock out to the side and stay in that position (it's been like it constantly for nearly 2 years now even though I did try to move it!) and then I have the Myoclonic spasms where my legs jerk widly up and down in the air!

I hope you get things sorted soon as I know how painful and annoying they can be - I would definitely go and see a Neurologist and see if they are able to do anything!

Please keep us updated and if you have any questions, please let me know!:hug:

Quote:

Originally Posted by kelly6449ed (Post 460228)

Hay little young lady,
again I am amazed with how much you know!

I seen your vid on here, my spasm, are lets see, if I can say this right
I jerk, at times, top part of my body, then arm most in my left will spams in a jerking, like if I was to try and hold something, I would spill it, its kind of like what you would see in someone that it older, in age, but more sever
my legs, one goes like jello, and the bad one jumps all over, the place,
if I am sitting in my W/C and try and lift my leg up, it spams a lot worse, look out I could kick you, laying down is not bad, unless its cold, then I shake,
you can also feel it inside of me, with out seeing the spams you can feel it in my muscles, one of my PTs lady's was holding on to me in the pool, and she said she could feel my muscles in my back spamming,
right now I have a shaking feeling, going on, its in the top part of my body
but its cold also, and with the spams I do get a lot more pain,
hope this helps, and no I did not know there was a dif kind of spams
dose that sound like what you are talking about? my injury was in my spine,
that is why it spend so fast I was told,
thank you, I will find out, oh they do not go out to the side, they are more of an shaking jerking, walbing cant spell it, ugg

take care Ali,
and thank you for your wisdom beyond your years, and kind words,
smiles
Kelly
PS also you can see my big toe, on my bad foot spams like it is trying to curl under like the rest of them are, something it dose join the rest of them
that is odd to see, :eek:

I think Ali is right......they need to consider Dystonia and Myoclonus with you. It sounds a lot like that is what is going on. There ARE various meds that could help you with that. It may take some trial and error to get you dosed properly, but you would feel so much better and hopefully have more mobility. Don't worry about your spelling. We're all family here and we know what you're saying!!

When is your appointment with your neurologist??? You mentioned problems with your toenails?? Is it in the affected limb??? I'm sorry if you're having to repeat a lot of information. My brain and memory are foggy and I can't keep things straight anymore. ANY doctor that knows ANYTHING about RSD knows it affects the nails. My toenails have all but quit growing. I haven't had to cut them since I got RSD (2 months ago).

I hope you're able to get some help.....and a BETTER doctor.

hay Ali,
Wow, thank you
so is that part of RSD? also, I had a brain scan done, would of that have shown up? they did say I had a cunushon also, with my whiplash and TMJ
but no one seems to care of that, and my neck, h disk C4C5C6C7,

Mominpain,
oh yes, my toe nails are bad on my bad RSD leg and foot, there is pic posted
you can see, I am trying to hold me toe out so you can see them,,
please take a look and let me know what you think?
again no one is looking in to that, UGGGGGGGGGGGGGGGGG
my so so good leg, the toe nails are looking bad also, very thin, to where you can peel them off, and all white looking, to of my toe nail have grown up!
not out, but up! what is that all about,? and thicker, looking with waves in them,

Peace
and thank you for all your help,,
Kelly

oops I forget to add, when I had the spams,
they are in my really bad leg and really bad arm, its my right leg and left arm
my arm just starts in the showder kind of a jerking and then the hole arm,, and hand, left leg goes all jello looking, wobbly,,,wish I had a vid cam, I would take vid of them :eek:

I am not coordinated enough to find the pictures of your toes!! I am directionally dysfunctional.....even on the forum!!! I'll keep trying, but from your description.......it IS absolutely the RSD. Your doc should know that.

I am pretty sure that the other conditions would not show up on an MRI. I think you would need a nerve conduction test or something. I'll try to do some research and see what I can find.

I'll check to see what I can find out about the toenails too. I'm not sure what they can do about that......you just want to watch very closely to make sure they don't get infected. Let me go research for you......I'll write back in a few. Hugs!!

Ali

I just watch a vid on youtube,
http://www.youtube.com/watch?v=qE_Ow...eature=related
this vid, is how mine are, http://www.youtube.com/watch?v=WhvYk...eature=related
and like this, also, when they are really bad, they look like the 1st vid
is that one of you? the next vid , is not f RSD, but I seen it and I spams like that, when its not really bad, so,,,,dose this look like what you are talking about?

hugs
Kelly

Its ok
here is the link
just click on it and it will take you to my pic, you can stop it when it gets to my toes, they are gross sorry, let me know if that works for you
if not can just send it to you in an PM also

peace
Kelly
PS oops for got to add the link LOL HAHA
http://www.youtube.com/watch?v=WhvYk...eature=related

http://www.wemove.org/dys/dys.html (scroll down to dystonia on the left)
http://www.dystonia.org.uk/about-dys...page32250.html
http://emedicine.medscape.com/article/1145318-overview (it talks about nail changes about 2/3 way down. It also mentions the jerking movements earlier in the article.)

I hope this gives you a little help. It probably already mentions a lot of what I'm sure you already know, but maybe you could print these articles out to take to your DOCTOR!! Keep us posted on how you're doing!!

Yes......I found your photobucket (and do remember seeing them when you posted them recently). Your toes aren't that gross (you should see my hubby's and he doesn't even have RSD!!! Smile)!! I definitely think the thin nails are from the RSD. I just do not understand why these doctors are not treating you properly???? It is so OBVIOUS what the culprit is. My biggest concern with you are the tremors. They need to be treating you for that. I hope the links I sent help.

Take care!!

LOL now I am LMBO
I did not add the right link again
I hate RSD! my mind dose not work good no more
http://flickr.com/photos/rsdcrps/show/with/3132061607/
http://flickr.com/photos/rsdcrps/with/3132061607/

there are 2 ways you can see them I added both so you can pick witch one works for you ,,smiles

oh and my Ozzy is in them also, smiles
he is my buddy and he was sad when I was taken to the ER ,,he was crying in my pillow, I never seen him look like that before,
brakes my heart