[ali12]

Hi everyone,

My mom finally got round to taking the video of my leg and it's been posted online, so my hairy RSD leg is now available to view. Along with my puppy Jack who wanted to get in on the act too!!!

Here is the link to the video:

http://uk.youtube.com/watch?v=qE_OwuilOew

Has anyone seen anything like this before? When me and my mom spoke to my PM doctor last Tuesday has said that he has never seen spasms like this in RSD before, so he wanted us to video my leg so that he could speak to other pain consultants in England and the USA.

Thanks for all of the support and best wishes
Alison

[dreambeliever128]

Thanks for showing this to us. It shows us more of how RSD can effect someone
then some of us even know.

My fingers spasm up. They did last week when I was holding my fork to eat. It takes more time to get them to calm down then they use to so I do know about the spasms.

I am so sorry to see you going through this and I just pray to God that someone will help you find some answers to calm this down for you. Massaging my fingers help straighten them out most of the time but it didn't work last week. You can also see how wasted away my fingers are on my right hand.

That is also a very good website. I watched a lot of it and it sure hits home doesn't it?

I have been laying in bed most of today. It snowed here last night and the weather sets me off worse then anything I have found. I had to take Methadone today and put a patch on in hopes to calm it down some. Mine I am sure has spread into my legs. It was just in my right foot and in the past few months my legs are giving me fits. My Dr. just had a cat scan done on me Monday and it showed arthritis in my back but not to the extent of causing the leg pain I am dealing with.

I'm trying to stay off of the Methadone due to my system shutting down from it.

It's too bad we can't get more people to go to that website and watch those videos to help get awareness out there. Maybe if we all send them to everyone we email then that might be a start.

You are one brave girl. Your Mom and Dad must be very proud of you that you can help them pull together what help you need and research you need done.

My heart goes out to you.

Ada

[dreambeliever128]

I just wanted to say I sent this website out to everyone I know and to Govenor Ritter of Co. along with a title saying, not enough research, not enough knowledge.

If everyone would do this then MAYBE we can see something more being done for RSD patients.

Thanks again girl.

Ada

[Abbie]

Ali...

Thank you for posting that!!

I've had similar spasms but mostly in my hands and arms. My pinky fingers will start shaking like your toe then it goes through out my arm...

I have shorter spasms in my feet and legs... mostly the muscles rolling like the waves in the ocean...but end with a violent kick.

I pray your doctor find something that helps you...

You are a special young lady.

WOW.. Jack is a cutie!!! Looks like he's full of energy.

God Bless you.
Abbie

[RSD_Angel]

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

[Twinkletoes]

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

[nopainever]

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

[Desi]

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

[vanityfaire]

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

[SandyC]

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.