Hi all! I've been lurking for awhile but haven't had the courage to post until today. First, thank you for all of the great information. I've gained a lot of knowledge from this site and I have all of you to thank for that. You are all fabulous. Thank you.

I live NW of Austin, TX and I have been semi-diagnosed with this disorder by my Neurologist. The strange thing is that the only symptom I have is the burning pain (due to a radial nerve transplant surgery in my arm in 2008). I have been to two different Pain Management Doctors and they really couldn't give me a firm diagnosis, either. Both tried blocks and trigger point injections (this was before I started reading here,) which didn't help, at all.

I have fairly good insurance and would like to go somewhere (anywhere) to get some sort of firm diagnosis. Would any of you recommend Mayo in Minnesota or the International RSD Institute in Tampa? Or, is there a specific doctor or institute that you could recommend where I might be able to get in within the next few months? I would really appreciate it.

Thank you so much for your time and I look forward to meeting everyone!

Tiff

Hi Tiff, Welcome to Neurotalk. I am glad you found us too. This is such a wonderful group of compassionate, kind, people who have a huge combined knowledge. I, too, got RSD following surgery. I also flew a few states away and saw an ortho specialist who diagnosed me in 1 minute and confirmed it with nuclear hand scan. It was 4 years later.
The Cleveland Clinic is well known for RSD. Others will come on here with Drs. names. In Florida, I contacted Dr. Hooshmand, (retired now) but still has website up. Lots of good information. rsd.rx.com Go under puzzles and there are 140 some questions with his answers. He has referred people to another Dr. The name and phone number is on the website. Also I know there are some good Drs. in Philly. Penn. The ketamine trial study was done at the Mayo here in Scottsdale, AZ several years ago and two of the Drs. are now in Phillly.
Even though I wasn't diagnosed for 4 years, I was started in physical therapy within a week. The p.t. has kept me mobile and also desensitized me. I also did light massage therapy on my own-weekly. Very painful,, but I'm mobile, except for one hand, only partially mobile. It's been 15 years and full body. Swimming is good, water temp. needs to be 86 degrees.
RSDSA is the national organization for RSD and you can put in your zip for Dr. name and also local support group.
Welcome again, and hope you find a food RSD Dr. Mine is a neurologist, psychiatrist, and pharmacologist. An anti-inflammatory diet is also good.
Take care, your friend, loretta with soft hugs

Welcome, Tiff!

You might also want to try, besides what great info loretta gave you,
Go to
rsdsa.org

(a very informative website btw),
and they have a doctor finder, put in your zip code, and they'll find you a doctor, support group, etc.

The burning pain, in my experience was the first thing that I felt, or experienced for quite a while. (since 83.) So, it's important that you try to 'nip this in the bud'.
Act quickly. You've no time to lose!

This is a great group, as you've noticed, and we're all here to help one another.
Don't be shy!

Pete

Thanks Loretta and Pete! You have both given me great information (I've been online all day). I was even able to locate a dr. in Dallas who specializes in IV (Ketamine). I meet with him in a few weeks. Thank you.

I'm excited to get to know everyone!! Have a wonderful night. Tiffany

Hi Tif, I think I forgot to tell you, I did go into remission for over a year twice, following p.t. to get my range of motion back in my frozen shoulder. After a year plus of remission, it moved to other shoulder-more therapy and then another remission. You can do desensitization in therapy and also at home. They had me take 5-6 bowls and put cotton balls, rice, coffee grounds, ets in each bowl and run hands feet thru them to desensitize our limbs. Something that helps me was the tens unit my hand ortho who diagnosed me ordered. It's NOT invasive like the SCS, but interrupts the pain signals to the brain. SCS words for some, but causes SPREAD to many. I choose not to have any invasive procedures. For a blood draw, I ask for a butterfly needle-smaller. Dentist, I take antibiotic the day of appointment and use gas mask. Keeps the sympathetic nervous system calmed. Music, meditation, prayers, visualization, biofeedback all help keep ours systems calmer. I hope there is something that helps you. Comedy-really any good distraction -I love my kitty sleeping with me, purring and snuggling next tome. She loves it.
Take care of yourself, know your limitations, and keep positive-I found counseling so helpful, helped me thru the grieving process and gave me tools to cope with this huge change. I've had it 15 years and am 61, so grateful I had the years that I did. Our daughter was 15, and we did so much together, traveling and sports. The remissions were during your later teen years and wedding, so am thankful for that. Swimming is something I hope to get back to doing regularly this spring-losing the weight I gained on 3200 mg of neurotin.But it stopped the dystonia.
My big goal is to do HBOT treatment. My Dr. built two new clinics with one in each. About 5-10 min. away. They promote circulation, healing.
Take care, and wish you well, Let us know how the ketamine goes? The trial study several years ago was at the Mayo here in Scottsdale. One of my girlfriends was a helper to the 5 Drs. That is something I would be willing to try. Does health insurance cover it?
Be Well, loretta with soft hugs

Loretta - Thank you for your kind words and for all of the helpful information. I really appreciate it. Additionally, I'm so glad that you experienced some relief (remission) over the years. Hopefully they will find a cure you'll find permanent remission

I will follow up once I'm back the end of next week. Who knows, this might not work and I'm scared of course but I'm going to give it a shot. At least I can let everyone here know my experience.

Take care,
Tiffany

Eh' Tiff...KS here..I see you have already met some of our really awesome people here... Welcome to our family..great to have you with us..let me know if there is anything I can help you with... I am a 2+ yr. RSD patient also..rt. leg...then all over the place..heaven help me!! I do have a SCS and a forgetful mind and my newest..I have tremors... let me tell you, my new friend..it is a bear but we make a pact here..to look forward as best we can and keep smilin in the mean time... my most favorite little diddy is: "Life is not waiting for the storm to pass...Life is about learning to dance in the rain"... My oh my!! Ain't that the truth...Good luck with your treatment..keep us posted and again..nice to meet you here... sorry about the circumstances tho....

Take care, KS

Hi Tiff- I got my diagnosis after having a 3 phase bone scan. You could have it done locally and take it from there....If it is negative it doesn't mean you don't have RSD, but if it positive you most likely do have RSD. (As I write this I realize this disease makes no sense! lol)

Debbie