ALi, my big toe does that same thing yours does in the begining of your video!! its sooo strange to see something that i cant even descibe to my docs , and its on here!! im glad im not alone!! i jsut wish i can catch mine!! when mine start the min. i grab the camera it stops.. lol figures right!! THanks for posting this pic and hope all is well!!

I am heading to VA beach to visit my sis for the weekend and have a 8 hour drive in head of me . IM leaving at 5 in the after noon.. so i wont get there till way late.. thank god my bro is going to so at least i have company!! So sleep tight and hugs from me to you!!

Amber

Honestly I had no idea. Thanks for sharing, Ali. You are a brave girl and a sweetheart!!!

I am so glad that you were able to catch that on Video...Mine used to be that bad (almost like seizures) about 1.5 years ago, before the baby. They were so bad that I was in the ER with them and the staff had no clue what was wrong with me. They diagnosed me with withdrawling from opiates and sent me home with more drugs...

I still have them in both my legs, but they are more like jerks and twitches, especially at night when I want to be resting.

Thanks for posting that! I had no idea that you were dealing with that craziness...How often does that happen to you?

Hope you are well..Lots of love to you!

Heather

Hi Ali!
I do not have any spasms but I do appreciate you sending that out, so that other's who may be having the same thing, be it in their legs, arms, fingers etc. know that they are not alone. May God bless you, Ali. My prayers are with you sweetie!!~Love, Desi

I have not seen this sort of spasming. I have not had that happen to me. I did watch another U2 video of someone else that showed those signs. I am so very proud of you sweetie..what a horrible thing to have to deal with when all you want is to talk to the girlfriends and do fun pink stuff. Well the necklace is being made up for you. I assume a bracelet would be too owie for you to wear, but if not let me know....Loves and hugs-jo

My hubby has those kind of spasms but he has MS, not RSD. Thank you for sharing and I hope you find out what they think this is. We do the same thing when seeing the doctor about something new. It's a great tool.

Heather
Sorry its taken so long to reply
You asked about the frequency of the spasms
They are pretty much on a four minute cycle - during the first three minutes of each cycle just the toe twitches and tremors on a regular basis - eventually this builds up the the whole leg shaking from the thigh down for the last minute of the cycle, then the whole thing starts again
The frequency can be made worse if Ali has a knock - which is inevitable when the leg is so "active"
Hope this helps
Ali's mum

Ali, thank you so much for posting the video. I have leg spasms too. Not quite to that level yet but getting there. it is so comforting to know that someone else has somethng you have and that you havent been misdiagnosisd. Ofcourse I am very sorry we both have them. I was worried my might have MS now too. But I guess it is just another manifestation of RSD.. thank you again Ali. Nice to hear from you too. CZ