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03/03/2010 05:27 PM

Second Opinion for RSD

ScullySue
ScullySue  
Posts: 60
Member

Well, I had my second opinion today with a Neuro. He said it looks like I have some kind of sympathetic disease which could include RSD. He noted the cold temp of my foot, the bluish color and the loss of motion. He suggested getting a doppler and a 3-phase bone scan and told me to think about getting the sympathetic blocks. He also knew of our first neuro and said we were in good hands if we stayed with him.

I did see the first neuro earlier today who was disappointed that I wasn't able to move my foot yet. He is planning on doing another EMG next Tuesday. We will show him the tests that the other Neuro suggested to see if they are worth having. I mentioned to the new neuro we saw about not having any pain and he said for some reasons my nerves are not registerting any pain yet or for some reason blocking the pain for now...and I go to PT to wake up the nerves??? I mentioned this tonight at my PT session and he sort of agreed.

Anyway, I just want to do my best and try to get my foot moving again. I won't let this get me down.

Thank you all for listening and I hope everyone is feeling well today. You are all in my thoughts and prayers.

Sue

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03/03/2010 08:56 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi Sue,

I'm sorry to hear that you are still having no clear answers why you can't move your foot. I know it's scary and frustrating but you have a great attitude. I hope so much that the pain the neuro is expecting never happens. I know that you desperating want movement back and anyone would but the pain in my foot has made each moment of my life a living hell right now without the ability to do anything. Hopefully your PT will help the movement come back and not the pain. I wish you the best with it all and hope you'll let us know again how you're doing!

gail


03/03/2010 11:36 PM
newrsd
 
Posts: 1076
Senior Member

If his theory is really true... then I would be thrilled to let the nerves sleep because trust me you don't want to feel the pain when they are awake. Cool

I know how frustrating it is not to know.

What about trying a pain management dr. who specializes in RSD on another orthopedist?

Sometimes another type of specialist helps because they look at it from a different angle.

for example... the orthopedist found that my fracture hadn't healed totally as the cause... the rheumatogist said it was something in my blood and a arthriits type issue...the podiatrist made me get 3 types of arthotics b4 he realized they did nothing...the neurologist said it was RSD... etc..


03/04/2010 04:21 AM
Lookinglass

Sue, New is so very right in you not wanting to feel this pain. It truely is a blessing for you. I know you want to get movement back. And you'll give your PT everything you can. This to me is just another mystery of how RSD differs a bit in all of us.

I had 2 of the 3-phase bone scans. The first one was early in my RSD and it was neg for it. But I remember the tech saying you sure are sweating alot. But I didn't think anything of it. That was before I knew it was a symptom. And then another at 10 months which showed definitely RSD. They was scrambling to get me the blocks then. But it was too late. Pt did get me some movement back though and I will always be grateful for that. But in them trying to desensitise my hand and arm they super sensitised it. So it went from the heat sensations that I felt to a full blown burning. She set me on fire and I let her know it with a few not so nice words. It has never went away since. And my EMG was in the normal ranges as well. But when he poked me with those needles it felt like he was going for the bone and they were railroad spikes. Again I didn't really think anything of it then. Now it totally makes sense. Our pain is super sized.

So for your sake I hope you can get movement back but that you continue to not have the pain that goes with it. Wishing you the best of luck! And keep us posted please.


03/04/2010 12:17 PM
DarkPain
DarkPain  
Posts: 366
Member

You came to the right place for support. I registered to this forum last year and did not say anything for the first several months.

There are a lot of 'lurkers' (people who read and don't talk) here and that is the best part of our forums. You go ahead and read up on what we endure. We are a select few who share the same life changing disease.

You might possibly gain more insight than most doctors just reading and doing personal research.

I know that for myself, I have now taken more responsibility for my health than ever. I don't let doctors 'mess with my body' unless I know for sure that #1 they know what they are doing and #2 I THINK that the procedure or technique has a chance to work.

So don't become some guinea pig for a doctor's "practice" in their investigation on what RSD might be.

I really hope and pray that you don't go through some of the greater pains that are expressed here on our forums. But if that does not happen, you have friends here who love and care for you.

/hugs

Dark Pain


03/04/2010 12:31 PM
ScullySue
ScullySue  
Posts: 60
Member

Dark Pain,

Thanks so much for your response. I love the fact that when I joined this group, I had responses in a few minutes! I so look forward to every day coming here and reading my messages and letting all my friends know what's going on in my life now dx with RSD. It has been a rollercoaster the last few months but now I know it's pretty much confirmed and we have a great Neuro who is really motivated to get my foot moving. I do have to ask him about the sympathetic blocks since the other neuro said it was good to get them earlier on rather than later. So much to think about but at least I know I can come here and vent and share my fears and you guys will be here.

Thanks so much.

Sue


03/04/2010 12:35 PM
ScullySue
ScullySue  
Posts: 60
Member

Hi Lookinglass,

Our second opinion stated about getting a doppler done in case of any blod clots and a 3-phase bone scan. We are going to check with our first Neuro if these tests are necessary. Most likely we are going with the first doctor. We feel comfortable with him and he is very eager to get my foot moving. As far as the pain, I hope it doesn't come either!! Time will tell, it's a bit scary not knowing what this condition will do next. So happy to have friends here that I can come to and share my hopes and fears.

Thanks again and I hope you are feeling well.

Sue


03/04/2010 12:36 PM
ScullySue
ScullySue  
Posts: 60
Member

Hi Gail,

Thanks so much. My PT said I made a little progress with my foot today, that's good news and boy do I need it!! The Neuro said if I don't improve any by next week he will do another EMG, ouch!!! I hope not.

Take care.

Sue


03/04/2010 12:42 PM
ScullySue
ScullySue  
Posts: 60
Member

The Ortho docs had NO CLUE what was going on with my foot and offered no suggestions. Two neuro said it was RSD, but I don't have the pain so not real sure what to do. The second opinion Neuro we saw yesterday mentioned about the sympathetic blocks, getting them now rather then waiting till later, not sure how they work and since I am not having any pain, I full don't understand them. It's just so much to take in and think about and the scary part is you just don't know what will happen next. I am so glad that I found this support group, you guys have been amazing.

Thanks again.

Sue


03/04/2010 08:45 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi Sue,

Please be sure to ask questions about the sympathetic blocks. When I had the 3 I had, I was told that the purpose was for pain reduction. In the reading that I have done I have not read of any other purpose. Just as the others have mentioned SO much confusion with different doctors giving them different answers, I have also been disappointed with how many docs have asked me to do and sent me to do and all but forced me to do different tests. Some of them have been extremely expensive and very lucrative for the doctors. While I would not hesitate to have a lumbar sympathetic block if needed for pain control there are some risks involved and I would not do it experimentally only. Be sure since your situation is rare that you don't let them make you a guinea pig. Just watching out for ya!

gail

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