NeuroTalk Support Groups - has anyone heard of RND? reflex Neurovascular dystrophy

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - has anyone heard of RND? reflex Neurovascular dystrophy - kid version of RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/29813-heard-rnd-reflex-neurovascular-dystrophy-kid-version-rsd.html)

TO ALL:

Let me explain my situation to ALL again...

1st symptom started 7/20/2007 - Don't recall having an injury - was stressed out like CRAZY!
it spread like CRAZY in 1 MONTH even a few weeks
my PM doc works VERY close with Dr S - he is only 30 minutes from him
He also is starting a ketamine IV suite in his office later this month.
They hardly EVER see it spread this fast in a patient.
I am supposedly a RESEARCH SUBJECT of some sort of Dr. S
I have a follow up appt next week with him and his team
That is how I got in so fast and how I got on the list to Germany.
my prognosis is I may be in a wheelchair in a couple of months. I'm getting worse each day. I have dystonia in my left arm and they are going to do a cervical block to see if will help and bring my arm back down again.
Other than that they say IV ketamine will help me will i'm waiting to go to germany but we are fighting with the insurance company.
Like I mentioned before this is ALL so new to me, most of you have been dealing with this for some time, even years.
I've learned so much from the week or so that I've been a member. please continue to be supportive and resourceful.
carrie

Carrie,

It is very much in your favour to have Dr S on your side and so lucky you have contacts:)
You are a perfect example of how this disease can hit without any particular inciting event and that we do not all follow any set pattern when it comes to signs , symptoms and progress of the disease.
I do hope you can get your Ketamine infusion as soon as possible--it sure sounds as though you need the intervention of someone as experienced as Dr S.
I am sending you all my very best wishes that you get an answer and that things turn around for you soon---this can be a scary disease BUT THERE IS HOPE.
love Tayla:hug:

Hi Ya Tayla! Your post just made so much sense here!! I for one started getting the Stellate ganglion blocks in the early part of October. My new pain management Doc. who did the one was just so helpful!! The other three done by another PMD did them all wrong. Anyway, when I had the SGB on Oct. the 4th. I was feeling so good for 5 days!! I believe these blocks along with PT is the answer. sure, my RSD flared for a bit, but I was on medication(Pain) to help along with the physical therapy) So, all in all it makes so much sense to go have the block, take your pain meds and get up off that recliner, couch chair and whatever and get those muscles moving, get those limbs moving. I was having a pain free day that turned into 4 more since the SGB Now, I go back into the office, get an I.V. with medication to put me to sleep, have the block, go home, rest, take the pain meds, do some PT and I am doing alright. My next block is Oct. 25th. and I am hoping that this block will help even more than the first. I complained that PT was hurting, flaring my RSD when all all along, Now please keep in mind, that this is me.. I am not talking about anyone else here, but for me, It all is working out towards the good. My PMD is trying to but this beast in the far off back corner by hopefully putting it into remission by blocks, medication and phycical therapy! Now I know what it "FINALLY" means that the eariler caught, the better your out come. I just didn't want to hear anything from no other pain management dr.'s in the beginning. So, here I am going to have my second SGB and I am atually looking forward to having this, meds and PT to help. I believe all three go hand in hand!!
So, as for me.. this is the way I am going!! much love~ Desi

Desi, That's terrific so hope the relief grows.

Auberon

Thank You, Auberon! I feel I am the ONE who has to make this happen if I want to get to feeling better! I have made up my mind to listen to no one, but my own body, pain. Yes, I welcome comments, read, take other peoples advice to heart when need be. what I'm getting across here.. I don't want to go around in circles anymore. I want to remain, stay as positive as I can, with a hope in knowing that this "Beast" can be kicked to the curb for a spell"! LOL Thanks again, Auberon!! ~Love, Desi

:winner_first_h4h:

Dear Desi,

Good for you! With your fantastic attitude you can't help but succeed.
My fingers and toes will be crossed for you when you have your next round of blocks:heartthrob:

Love Tayla:hug:

I think I have read a whole lot of these Dutch guidelines regurgitated here on NT.:rolleyes:
They are a MUST read !!!!
They are light years ahead of us in treating RSD/CRPS
They have national guidelines on the topic- pretty impressive no? ;)

Please enjoy if you have not done so already :)

CRPS_I_Guidelines_patient_version-1.pdf

peace

GnP

Thank you so very much for your reply back to me Tayla! You are "ALWAYS" there for everyone! You my friend, are a GEM and I love ya so much!! Thanks for the well wishes also, when I have my second "GO" of the SGB Love ya! ~Love, Desi

I am hoping you will see some difference in the block and it will make them see that blocks, PT and meds can help get you doing better quicker then having to wait to go to Germany.

I spent 4 years in PT. My insurance company fought me many times and finally gave up. My diagnoses went from back problems to TOS and then Fibro and RSD. I woke up one morning and couldn't get out of bed and that's when my Dr. immediately started PT.

I had 3 blocks that helped put mine into remission. I will say though that what I call remission is walking around, mimimal pain unless the weather or my overdoing things makes it worse. I still have the swelling at times, I still have the discoloration when I walk and swing my arms and hands but it did help put them into remission to where we aren't dealing with it all of the time. I use to cry and beg the Drs. to cut my right arm off.

I feel like Tayla on the PT. and blocks. Both kept me going and got me to a point to where I am on minimal doses of meds.

Good luck in whatever you find that works for you to get better.

Ada