A Prominant Pain doc told me I dont have RSD?
 

Went to a pain doc in NYC and he does not believe I have RSD. Let me briefly go over my history and see what you guys think. I think I definably have RSD
1997- starting getting a cold left foot (I was born with right hip dysplasia and walk with a limp putting a lot of strain on my left foot), No one could figure out why my foot got cold and achy....2003- Three phase bone scan results indicate RSD, Had a right hip replacement in 2003, Following the surgery my foot started to get hot and cold. Mirroring in right foot, hands starting stinging and then muscle wasting began in my arms/elbows. My feet still gets hot and cold and major pain. I use a scooter to get around--OK so why does he think I dont have it- 1- I don't have skin sensitivity in my left foot, 2-muscle wasting is far from the foot area-muscle wasting should be in foot. 3 I dont have abnormal hair or toenail growth. He thinks I have an autonomic disease but he does not know what I have. He even kind of laughed about the diagnosis of RSD -that it was so wrong. ARG- He is going to call some of his colleagues about me..Oh and he did and muscle test which showed that none of my pain is coming from muscles (directly)

Thanks for your thoughts....

Deb

Do you get blotchy/mottled skin, color changes of skin, swelling?

I thought the sensitivity to touch & breezes is a major RSD indicator:confused:
I'm interested to hear what our members think.

Did, or do you, use any crutches or a cane often when the foot is bad?

Other possibles -
the bone scan results could be caused from something else.

the limping for many years could impacted spinal alignment & fascia - and those might be causing compressions on the nerves to the foot.

if cane or crutches have been used a lot that might be related to the hand /arm issues.

rsd?
 

I do get mottled skin -which this doctor saw....I did not use crutches much- just a little after the hip replacement....And how about the mirroring? is there any other disease that would cause mirroring?

TY
Deb

PS- I would love to not have RSD but I truely believe I do...

There is one RSD case that comes to mind. This person showed several symptoms of RSD for years. A doctor found trapped nerves in this persons foot after many years of suffering, released them and all symptoms went away imediately. As I recall this person had previous EMGs but showed no trapped nerves but this doctor found them from EMG results he/she performed.

ty
 

OK but again, why would i have mirroring pain in right foot...muscle wasting in my arms and now back etc,,,,

Thanks
Deb

Perhaps you're starting at the wrong doctor?
 

Most RSD is more of a byproduct that began after some other accident or disease hit first, so that's where I'd start as far as trying to figure out what the nature of the problem is.

Though you listed quite a few things that would make me wonder if you are in fact dealing with RSD, I'd first be wanting to know what other damage is involved such as nerve damage or some other possible disease. This kind of diagnosis can only be found through the right kind of doctor. Sadly enough, pain doctors are rarely the right starting point by my opinion. The only time they can really help is once you have a firm diagnosis that's telling us why you're suffering with pain and the associated problems that go with it.

Because of the unique ambiguity of RSD, it can be easy to blame RSD when in all reality the cause of your health problems might just be something else altogether. My best advice is to seek out someone you trust who actually deals with the physical side first and then from there head back to your well respected pain doctor with whatever new information they learn so your pain can be treated more effectively. You will find your answers I promise, it's just we have to be patient during the learning phase. Best of luck, Bob.

Hi Deb,

So sorry to here you are not doing well. But I think a lot of us who are diagnosed with RSD have other lingering problems. This is one of the main reasons, until I confince myself that I don't have nerve damage that can be corrected, I will not do anymore invasive RSD Treatments. I have been told I have serious nerve damage from my injury,CRPS II and PN but know doctor is willing to really sink there teeth into my case,as far as the nerve damage I have a great PM doctor, because of all my arm has been through. I have been told it's a miracle I did as wonderful as I did and got 90% range of motion and use back when they estimated only 40-50%. So Deb I understand your continuing search for the correct answer, because I am also left with pain not like in the beginning but still have it.

If you don't mind me asking who is the doctor you saw in NYC?

Good Luck

Gabbycakes

Sorry I forgot one thing. You stated you don't have normal nail and hair growth? I have been told and read that is one of the biggest signs of RSD,over growth, it was mine and my PT person picked it up. When you have a cast on for a long time that can also cause abnormal hair growth but that's temporary I think that's why it was not picked up by my orthopedic surgeon. Just curious.

TY
 

Thanks for your response. I have been to many well respected doctors and neurologist. My nerve conduction tests were negative a long while back. I keep sticking with the rsd diagnosis because of the mirroring pain and temp changes and muscle weakness. The doc I saw in NYC is going to speak to some of his colleagues and get back to me soon.....TY!

Debbie

Deb, as I recall I think this person who suffered from these trapped nerves also had spread too. I will say this person used to post on this site and actually posted many times about her RSD pain and symptoms. Sometime later she created a thread about her nerves in her feet were released and had immediate pain relief. May be a member will remember her. As often happens when those who get great releif from RSD and or severe nerve pain these members tend to drift off unfortuately but understandibly.