[debbiehub]

For the last 13 years I thought I had RSD- It started with a cold foot and then after a hip replacemnt- it spread- my foot would get hot and cold and now I have muscle weekness in my arms a legs and back. A recent neuro exam said I dont have RSD. I have small fiber neuropathy. This was discovered thru a punch biopsy. The doc said the type of small fiber neuropathy is not consistent with RSD and concluded that I don't have it. He wants to try IVIG infusions....anyone have success with IVIG?

TY

Debbie

[daniella]

I know a lady who gets the IVIG weekly for the last couple years. She has PN and auto immune conditions. I could email her and ask if she can chat with you about it.
On a side note I have both RSD and PN. I know your doctor said he does not think you have RSD now but just thought I would mention that I have both. Also different doctors feel RSD dx is based on different symptoms etc.

[debbiehub]

I would love to chat with your friend..I will PM you my email address. I know what your saying..it is really hard for me to believe I dont have RSD...I have the mirroring pain, muscle wasting all over..but I dont have the skin sensitivity or burning-My feet feel like I am walking on glass..anyway he ruled out RSD because of the specific type of small fiber neuropathy...so I still think I have rsd but I hope the doc is correct!!

Deb

[daniella]

I hope you got to chat with her.
Also do they know why you have small fiber neuropathy? I know with my pain doctor when he was trying to figure out what was causing my pain the PN or RSD he was saying that if it was the PN and if we could find the why out then obviously it is easier to treat. With me this same pain doctor also was ? about the RSD though then he stated he did feel I had it. He said some doctors are too quick to jump on it being rsd when they can't find out why you are having pain. I do feel though since I have both and my rsd did not start from an injury or was it dx through a certain test like you hear but I still was dx with it from doctors who I would think since from Clevelnad Clinic etc who know what they are speaking but who knows.
Regardless I just hope you get some relief.

[Dubious]

Originally Posted by debbiehub

For the last 13 years I thought I had RSD- It started with a cold foot and then after a hip replacemnt- it spread- my foot would get hot and cold and now I have muscle weekness in my arms a legs and back. A recent neuro exam said I dont have RSD. I have small fiber neuropathy. This was discovered thru a punch biopsy. The doc said the type of small fiber neuropathy is not consistent with RSD and concluded that I don't have it. He wants to try IVIG infusions....anyone have success with IVIG?

TY

Debbie

Hi Deb,

Just curious, what brought on the cold foot? And since your symptoms seemingly worsened after your hip surgey, why would the surgeon not relate it to Type II CRPS? Call me naive...!

[debbiehub]

Originally Posted by Dubious

Hi Deb,

Just curious, what brought on the cold foot? And since your symptoms seemingly worsened after your hip surgey, why would the surgeon not relate it to Type II CRPS? Call me naive...!

The cold foot could have been brought on by a neuropathy I guess..I really don't know ...my case is so confusing because it is not typical RSD. I don't know if this neuro is correct but I am going go thru with the IVIG - Maybe it will help either way?
I am constantly thinking about it and its driving me nuts!
TY
Deb