Hello, I wanted to introduce myself. I was diagnosed with RSD 5 yrs ago this May. I take Ketamine, Neurontin, Baclofen, Cymbalta, Vicodin, and Lidoderm Patches. I have had so many blocks I have lost count. I also had a pamidronate infusion and I take N-Acetly-Cysteine. I was blessed to be able to participate in the Neurotropin study at NIH. It worked so well that my toes which were stuck up in the air and were fixed returned to their normal position and movement returned to all except my big toe which bends a little. It enabled me to walk again and my pain went to a 0-1. Unfortunately, I have not been able to find a doctor who will fill out the paperwork for compassionate use. Liability is the issue. However I believe it still helps and that is why I am doing as well as I am after this many years. I am going for a LSB on Mon and then on Weds I am having a biopsy on my right breast. I have been married for 25 yrs to a wonderful, loving, patient and funny man. We have a 15 yr old son. Did some farming until I got RSD ( see my post under new members). Then sold and moved to the foothills in Northern Ca. We live at the 3000 ft elevation where we enjoy some snow, deer, beautiful tall pines and oaks and peace and quiet. Looking forward to meeting all of you and helping where I can. Take Care

Hey,
Welcome to Neurotalk. If you need anything just ask. You will find many caring and supportive people here.

Please let me introduce myself:

My name is Alison, I am 12 years old and I suffer from RSD in my left leg and right arm. I first developed RSD in my leg on the 16th March 2007 after an ankle sprain. After 4 months of physiotherapists telling me to stop imagining the pain, I was diagnosed with RSD, I felt as though my life had just ended. Immediatley after diagnosis my PM doctor performed a "Guanethidine nerve block", which caused me to lose my balance (I can't walk my leg shoots out in front of me)
2 months later my PM doctor prescribed me "Amitriptyline" to try and help me sleep but I suffered from a nasty side effect of "blurred vision", this resulted in a knock to my right arm. My arm began to swell, I got the burning pain, colour changes etc. 2 weeks later, I was diagnosed with RSD in my arm. The RSD in my arm has been into remission, but the RSD keeps flaring up when the weather is cold etc.

Good luck with the LSB and biopsy, I hope everything goes Ok. Please let us know how you get on.
Thanks and pain free hugs

Welcome to the group.

It sounds like you are getting the right things done. I am glad you are doing so good. That is a blessing in itself.

I like your description of your area. I live in Co. and can see Pikes Peak from my place and Bill and I use to go for rides and enjoyed the deer and elk. Brings back good memories.

I am pretty much in remission as far as the RSD goes. Blocks helped me a lot too. I go through a lot of lidocaine patches also. The pills I can't do but it sounds like they have you on some good ones.

Welcome again to the group and I hope you continue to do good.

Ada

Hi Countrymom,

Welcome to this group. There are so many wonderful people here who are full of knowledge and willing to share it with you.

I too like the description of your place. I live in Tx on a ranch and the largest tree we have is a Mesquite tree, and MANY of them!! But we do get the occasional deer and wild turkey, but plenty of cows, horses, mules, chickens, and a couple of barn cats. I like you view better...hahahaha.

I have been diagnosed with RSD since Oct. 2003 which started in my left ankle from a sever ankle break, but in Oct. 2006 after a dental visit and my body doing completely haywire, my RSD is now full body. Which makes for some interesting days to say the least, but at least it is never boring...hahahaha.

Anyway, Welcome again and I look forward to getting to know you better.

Love, Peace & Blessings,
Marla
RSD Coach TM

I too live in Northern Calif. We live in a small community. We have a small courtry grocery, post office & florist & a couple of places to eat. But we are surrounded by pines, cedars, scrub oaks, & there are many orchards & vineyards around us. We too have snow...................which I am surely sick of this year already We too live at approx 3200 ft. I moved here from Iowa about 8 yrs ago. I guess I will look Neurotropin up to see what classification of drug it is if it has helped that much. Is it due to be released for public use any time soon?

Welcome to this website & sorry you have to deal with this monster also. The 3 little guys in the picture with me are my grandson's. I need to change the picture, it is over 1 yr old. The baby is now 2 yrs old. But it is a favorite of mine.


Debby

Thanks Allison. I am sorry for all that you have been through and all that you are going through. You must be a very special and strong young lady to handle everything. I bet you also have a supprotive family. I am glad that your arm is in remission and yes, I understand what you mean about the cold weather. You hang in there, you have such a great attitude and I was told by a doctor at the National Institutes of Health that those who have such an attitude are the ones who do better with this. Proud of you, kiddo Marilyn

Thanks, Ada. I am glad you are in remission, pretty much anyway. It sounds like you have some great views! Take Care Marilyn

Thanks, Marla. How many acres do you have? I just love farm animals and sure do miss it. It sounds nice. I bet your days are interesting, full body must be a huge challenge. I had severe jaw pain after a dentist visit a couple of years ago, couldn't open my mouth and the pain lasted for weeks. So I have not gone back, scared me. Now I have a chipped front tooth, you can't really tell so I have just let it go. It chipped towards the top on the side. Take Care, Marilyn

Hi Marilyn,
We currently have 200 acres and in the process of purchasing another 400 for wheat. It is nice at times, I think the best place to be is the boat dock we have over one of the stock tanks. I will see if I can find a picture of the boat dock, and of the place and post on here.

Yes, ma'am I have Full Body RSD, Full Body Osteoporosis with High Risk of Fracture, MS, and Fibromyalgia. So I am loaded with it all, talk about not sure where the pain is coming from....man oh man....hahahahaha. That is why I made it my goal to study hard and become an RSD Coach TM, because I was told all the other issues most likely occurred because I have RSD, so I sincerely believe it is meant for me to do what I can for whom ever I can. The link to my website is in my profile, if you would like to check me out, ya know, make sure I am who I say I am. There is a journal on there as well where you can read things I have done, etc., and I will be doing my own 1 hour radio talk show a week, starting on Feb. 12th about all my diagnosis', as well as those who dial in, and their stories, suggestions, etc.. Should be tons of fun, I am looking so forward to that.

I understand your being hesitate about the dentist, and I can't say I blame you. I have nothing against my dentist, bless his heart, he followed the guidelines I took him that were provided from www.rsds.org but my crazy body decided it just wanted to act bizarre and totally go out of control completely. It was a "horrible" time!! But it's such a learning process, Do you feel as if you have learned a lot about yourself since being diagnosed?
I sure have, and some things I really didn't want to know....hahahahaha.

I look forward to getting to know you better.

Love, Peace & Blessings,
Marla

I'm glad you found your way back. There for a few days I thought you lost your way here.

I am glad you are in remission. It helps show other people that it is a big possibility to get there.

Marla, Your place sounds beautiful. The only thing I don't have on your list is the fractures but I do have IC, CSS, TOS, and way to many others to mention.

I like your ideal of a radio talk show. You will learn a lot that way and help a lot.

Ada