I need some help, has anyone ever lost???
 

My daughter who has RSD, she got it from a ganglion cyst removal in her wrist... which it has now spreaded to her legs, back, well should I say "full body" now... She has since lost feeling in her toes/feet which has started going up her legs... She is now having trouble walking, or putting any pressure on them... There is a neurologist that is near us that diagnosed her with RSD, but he now says he don't know what to do for her..

HAS ANYONE EVER LOST COMPLETE FEELING ???

ANY HELP AT ALL WOULD BE GREATLY APPRECIATED!!!!!

Thank You,

Kellie

RSD does cause movement disorders (how peculiar that a neurologist would say that he doesn't know what to do for her! doctors - humph). Anyway, RSD certainly can and does damage the parts of the brain that process messages to 'tell' body parts to move. You might want to read some articles in the RSDSA library, they include some from a fall 2006 conference on the latest treatments (http://www.rsds.org/2/library/index.html), and also ask your doctor about a Spinal Cord Stimulator trial. A new medical article that might be helpful to your neurologist is by Robert Schwartzmann, , Schwartzman,R.J.; Alexander,G.M.; Grothusen,J., Pathophysiology of complex regional pain syndrome, Expert Review of Neurotherapeutics 6(5) 669-691 (May 2006). Schwartzmann also published an oldie but goodie in Neurology 40(1) 57-61 (1990) called The movement disorder of reflex sympathetic dystrophy.

some people I know have developed loss of feeling - i think it is in part of the criteria...???

"Odd or peculiar sensations. -.
- you may experience odd sensations in your afected limb. these are difficult to describe but are often described as "lime my mouth after a local anesthetic at the dentist", or as though it doesn't belong to you. Others say they feel "crawly" sensations, dull pins and needles or as though their limb is bigger than it is. Although these can feel peculiar and confusing they are recognised phenomenon of the condition.

"... I can never tell just where my arm is, it is sort of numb and without feeling, it almost feels as though the pain and sensations are too big for my arm and are trying to burst out".

This was taken from pg 5 of the CRPS/ RSD (UK) patient information book. (2005).

I don't know where my legs or arms are and have lost my proprioception. Just out of interest - if your daughter was to close her eyes and draw her body what does it look like? My dr did this with me and it was pretty revealing!

Hope things improve!!!

Love

Frogga xxxxxxxxx

Thank You,
 

Thank You, mollymcn and frogga, for replying back to me about this.. I appreciate your help with this. My daughter is only 15 and trying to go to school and deal with this, and it's starting to get to her.... she's a VERY positive person even though she has this, but I think since this is starting to effect her ability to walk, it's getting to her... She also has the burning, sharp, stabbing pain , all over as well... Which really breaks my heart, to see her like this and not sure how to help her..

They have sent her to Cincinnati Children's Hospital several times, now they are talking about sending her elsewhere, since CCH really didn't know how to help her either...

If you'll know of any Drs. on the east coast that deals with this, please let me know..

Once again, thank you both!!!

Kellie

Dr. in Ohio
 

Kellie.. you have a private message!

Hi Kellie,
 

I have a neighbor with RSD. She and I use to take walks. She is in her early 40's now but when I first met her I thought she had a stroke. She walks with a limp on her right side and her right arm is paralized from the RSD. It it her harder then the others I have seen around here with RSD. We had a group at one time and she seemed to be in the worst shape.

She had blocks for a long time to help with the pain but then they seemed to quit helping her.

Your daughter is young enough that hopefully if you can get her some good medical care then she might be able to get better.

I was just asking the about the Mayo Clinic for a friend that is looking for some help with her RSD. Have you checked into them?

I am sorry that your daughter is so young and going through this. No one should have to go through what we are seeing each other go through with the RSD.

Welcome to the group.

Ada

I have RSD in my Right foot and ankle and leg and lower back and moving into the other leg...

My foot is deformed due to the RSD attaacking it.. Its crooked, so that i can only walk on the outside part of my foot and the rest of it is up in the air. I havent been able to wiggle my toes or foot in 5 years.. its like my brain forgot they are there and I can not tell my self to wiggle them.. even therapy didnt help. I have the feeling that i have lost the sensation of my toes, but untill someone or something hits it, i know they are there!! So maybe thats what she is feeling... when nothing is touching it or anything like that, it feels like they are numb , but when you touch it , its well known.. but thats just me and my RSD...

Your daughter prob needs to start seeing a Pain Management Doctor.!! Neurologists are limited and a PM is more into treating RSDers


Take care and tell your daughter shes not alone!!

:hug:
~Angel

Dear Kellie -

I would seriously urge you to check out the practice group set up by Robert Schwartzman, M.D. in Philadelphia, whom I flew out from California to see 3 years ago. Although Dr. Schwartzman is now seeling a lighter patient load, and has consequently a 3 year waiting list, thare are other very, very good RSD doctors within his practice group. I know that Roz on our board saw Jahangir Maleki, M.D., and thought the world of him. Their contact information is as follows:

Robert J. Schwartzman, M.D.
Jahangir Maleki, M.D.
Department of Neurology,
Drexel University College of Medicine
Drexel Neurological Associates
219 No. Broad Street, 7th Floor
Philadelphia PA 19107-1519
215-762-7090
215-762-3161 (fax) [Attn. Carol for new appointments]

Best of luck in your search.

Mike

p.s. While I've been treated regularly at the Mayo Clinic in Rochester MN since I was an infant, and continuing through a cardiac work-up this last summer, I have only had - at best - mixed results in working with there RSD and pain specialists and know a number of people who have had the same experience. Part of the problem there is that their Department of Neurology has for many years been under the influence of a now semi-retired specialist in peripheral neurology, who, having done some great work in his time, is a MAJOR hawk against the use of opioids in patients with chronic pian conditions. Secondly, they are really reluctant to get into the treatment of RSD patients who live outside of their immediate area, where they believe, and perhaps rightly so, that RSD treatment is often a hit or miss situation, on account of which multiple appointments over time may be required before they get things right. I know that I was not a candidate for either in-patient ketamine infusions or thalidomide treatments, only because I didn't live nearby, on account of which it would be hard for me to be seen in follow-up appointments. Hope this is helpful.

Your help and input is greatly appreciated!!!
 

Thank You, daylilyfan, dreambeliever128, RSD Angel, and fmichael,

We really appreciate all your help and support.. And it is encouraging to us to have you'll to share our RSD problems with, and to be able to read yours as well....

Yes, My daughter is so young, and we are hoping that someone will show some interest in helping her.. She has had 2 nerve blocks in the past, one which helped and the other did not.. But, they have her on 3 diffferent meds a day, and she is seeing a pain psychologist ( which is a great lady) who is very understanding and is very helpful to my daughter , Kirsten..

But, she just keeps getting more problems as time goes..

THANK YOU ALL AGAIN,
TAKE CARE,
Kellie and Kirsten

Hi Their,

Here is a link to Maleki MD, maybe you could at least email him.

http://www.drexelmed.edu/Departments...2/Default.aspx

dr. maleki
 

:hug: Hi Kelli & Kristen

My heart goes out to you both. I can't imagine seeing my boys suffer with such pain and limitations or to experience it myself. My husband has had RSD in his left leg for 1 1/2 years. The pain is manageable for him. The limitations are harder.

I am writing because we saw Dr. Maleki for the first time about 2 weeks ago. He is very kind and knowledgable. He alots an hour for a new patient consultation but will take longer if necessary without making you feel rushed. We did not have to wait long for the appointment. He's no longer working with Dr. Schwartzman. Here is where his office is located:

Dr. Maleki
100 N. Presidential Boulevard
Bala Cynwyd, PA
1-610-949-7250

I have to say that while he was thorough, kind and knowledgeable, George had a severe delayed reaction to the exam. Common, so I hear, from other RSD patients after a manipulative exam. You may want to limit as much as possible the manipulations.

There are websites for teens. Perhaps you've already found them. I hope so. Here is one http://www.angelfire.com/amiga/rsdhopekids/rsd_is.htm

Best wishes,
Teresa

or SKIPS

xxxxxxxx

KellieS, I responded to your thread when you introduced yourself. :)

As far as the numbness, I have only had a small amount of that in my fingers/ toes at times when they were so cold (from the circulation problems of RSD), and it didn't last very long.

Hope your daughter is doing well! :hug:

Hi,
My heart goes out to your child. I got this at 3 an dit is hard when you are young. My question would be are you sure all her symtoms are RSD? Loss of feeling seem inconsistent with with a pain disorder. RSD is often a diagnosis of last resort. I would be sure to take her for at least 3 opinions with good neurologists. I would be thinking MS, and those issues if she has loss of feeling. How long has she had it??

Well,
 

First off, I want to Thank InHisHands, and mommyjen for their help and concern.


InHisHands, her feet stay extremely cold, she can wear 2 pairs of socks and they feel like they have been in the freezer.. She can never get them warm..
I am glad to hear that your hasn't lasted very long..

Mommyjen, She has had this for a couple of years now.... Her numbness and loosing feeling in her feet/toes are the part that has Drs. around here stumped.. And now with her having trouble walking too...She does in fact have alot of the symptoms of RSD, She has the burning, severe, stabbing pain , muscle wasting, shiny skin, which started in her wrist after she had the ganglion cyst removed. Right after her surgery it went up her arm, which is when they did the ganglion nerve blocks on her, she had a total of 2, which one helped her for ONLY 10 days, and the 2nd didn't help at all...
Since then it has went to her back, down both legs, and she gets real sharp jolts of pain through her other arm.

I just hope that we can find a good Dr. that will really help her... BEFORE this gets any worse.. Because the longer this is going she is getting worse...

Thanks again,
KellieS

Hi Theri,

I have 3 children, my youngest being 14. To watch your lovely daughter go thru this must be total hell.

I have had RSD for 5 years now. My 2 year mark was the roughest ever. Worse than delievering my 3 children natural childbirth. I have been on just about ever pain tablet from A to Z. But today I am only taking Valium.

I have told ever MD I want the root of the problem.

She has 2 things in her favor. Youth is on her side which she has a higher chance of remission. Also she has a very loving mom.

I hope today she is doing better. Love, Roz

HI,
I am sure she has it in her arm, just be sure all future symptoms aren't lumped into RSD. I had it for so long that my docs fell into that trap. I was suffering for years from fevers, rashes, pervasive pain.... then a developed chronic achilles tendonitis and it was all attributed to faulty autonimic nervous sytem and complications of RSD. AFter my son was born a doctor ran some " what if tests" My ANA came up very high at 1:1260. I have an aautoimmune disease as well. Not sure if it is Lupus, Scleroderma, or Mixed connective tissue disease. I also have very low vitamin D which can cause awful joint pain, cramps, and numbness ( I had it in my lips). Your daughter's vitamin D should be checked as well as her calcium. ANyone who has limited mobility and doesn't go out much ( most of us stay in all winter) should get vit. D checked frequently. SHe is young and there may be other conditions that she may develope or come and go. Just be sure they treat each symtom as potentially something else. Poor baby, I feel for her!