21, in college, and suffering
 

I have recently been diagnosed with RSD and found this forum to be the best source of info! It all started when I woke up the weekend before Halloween with what I thought was a charley horse in my left foot. I did pointe ballet for years but haven't done it in about 3 years so I figured it was an old injury. When it didn't get better I went had x-rays which were negative but was waiting on a MRI so was in a boot and on crutches. The MRI showed I had a Morton's Neuroma (a bundle of nerves in between your second and third toe) but by now my pain was in my big toe. I was sent to another Dr who told me that the bones in my foot weren't in the correct positions and my arch was too high so he sent me for orthotic inserts and gave me a cortisone injection into by toe to bring down the swelling (which worked for a bit). Over the months of December and January my foot continued to get worse and then started turning blue/ getting freezing cold to the point where I thought I had frostbite and my foot was going to fall off. All this time I had been seeing Dr's at college so I then saw a Dr when I was home. He finally diagnosed me with sesmoiditis (after a second MRI showed that the bone there was abnormal) and a mild form of RSD. He suggested physical therapy. I am now back at school and went to physical therapy but the therapist took one look at my foot/calf and told me a needed to see a specialist because my foot/calf/ankle is atrophied. My calf is two inches smaller than the other and my foot is visibly smaller as well. At this point I'm using one crutch to walk and "shape up" shoes to roll in since my ankle muscles are nonexistent. I am currently looking into specialists but since I have only had the symptoms for a couple of months they are hesitant to say this is definitely what I have. From reading these posts I now know I need to act quickly as treatment in the first couple of months is crucial yet the waiting list for Dr's is certainly longer than the time I need treatment in. If anyone has any advice I would love to hear it because my situation is becoming unbearable and this is not how I wanted to spend my last semester at college or my first year of being 21! Thanks for everyone here for understanding and I'm excited to see there are others out there that understand exactly how I feel.
xo
Genna

Gennipenni,

Welcome to the group. This is a great place to rant rave or just be a part of a group of people who understand what is going on with you. I noted you said you are recently diagnosised with rsd and you are hestitant to find a dr. but it is in your best interest to try and find one early on. RSD can be stopped if caught early enough. I would also like to say I am sorry to hear you have this monster. But key again is early intervention.

Thanks
 

Thanks for the welcome! (sort of!) I actually just called Dr. Schwartzman's office and was put on the waiting list of course. I wish they would've directed me to another specialist who would have time to see me sooner than two years from now. If anyone knows any in the tr-istate area that could work with Dr.S. I would really appreciate it!
Thanks again,
Genna

genni,
I recently found some dr.'s in Newark, DE they are at the Mid Atlantic spine and pain physicians they seem to do a full array of treatments and there is several dr.'s in the facility.

Hello Genni
 

I just wanted to say hello and Welcome to Neruo Talk. I am sorry that the RSD brought you here, but you will around real compassionate people. If you are having trouble getting into the doctor of your choice, sometimes a primary care physician can call and get you in earlier. Also keep posting and request if others in your area have RSD and the name of their doctor. Perhaps you can find someone quicker. I would hate to be told to wait two years either! Thats crazy. I also was told by others, that early intervention is really important too. Don't give up. Come back anytime you need to talk. NT will be here for you. ginnie

I was diagnosed a week ago. Angered after I had complained for 6 months of horrendous pain following my cervical rib removal for TOS in August. Finally I saw a physiatrist and said you need injections ASAP. My questions on the forum: I have CRPS in neck area, shoulder, and right arm as surgery was in C7 spine, does anyone here have it in the face. Am super worried about it spreading there. Am young, cute, was active (active volleyball, pilot, forester, fisherwoman) trying to get off pity party and found this site to be helpful. Was told by my pain clinic they shouldve put in a nerve block prior to my surgery to prevent this god awful thing. Didn't have one, and am furious. They need to put better information on their "What to Expect from Thoracic outlet surgery" pamphlets, or any pre-surgery pamphlets!"

New here, have had success with tDCS
 

I have been reading posts for some time and finally decided to join, hoping to help others. I have CRPS and I am a Spinal Cord Stimulator surviver. I say surviver because I unfortunately had a stimulator implanted before I knew of the dangers and risks of SCS with CRPS. Even more unfortunate my doctor suggested a second stimulator to control the spread to my wrist that occurred as a result of a revision surgery of the first SCS, which worked great for 20 months and then just stopped working.

I decided that one spread and one limb with dystonia as a result of a SCS was enough. My doc responded by telling me there was nothing more he could do for me.

I was very lucky to discover the posts on Neurotalk regarding tDCS. The SCS left me in a wheelchair. Although skeptical about tDCS, I read every clinical trial I could find, (unlike what I did with the SCS, that research was basically reading posts on forums of SCS "success stories" which consisted of a few people with CRPS who had not had their SCS for more than months or a few years, in addition to my doctor and the Boston Scientific rep who assured me that the procedure was effective and safe for CRPS patients.)

I have been using tDCS since the first week in January and I have regained full use of my hand and the alodynia in the wrist is gone. I am now on a walker and the dystonia on my foot as well as the spasms are greatly improved. My physical therapist believes we can now make some real progress. Also, the constant headaches and irritability have greatly lessened.

I so much hope that other's who have found failure with every other treatment try tDCS-especially consider this treatment before ever risking greatly worsening your condition with a SCS.

i am young and was in 3rd grade when i was found out about my rsd it was scary but went away thanks to dr. sheri:D

Welcome CRPSJames!

So happy that tDCS has helped your recovery from your failed spinal cord stimulator. It is nice to have tDCS company. I know how encouraged you must be that your dystonia has improved. Congrats on getting out of the wheelchair!!!!!! What an accomplishment!! It is wonderful that your wrist pain is abating. Please share anything about your tDCS treatment that can help others, including me!!!!!!

Dear James,

Wow, you have made my day. I am so looking forward to my daughters
treatment with TDCS in April.

Best of luck with your continued sucess.

Joydee :)