Ever feel like it's one thing after another?...

That's how I feel right now.

As if coping with RSD isn't enough, I developed Syncope and collapse about 25 times on average a day. My Doctor has never seen Syncope in RSD before so is pretty clueless about how to treat it and no other Doctors specialising in that area will see me until I am 16 ... another 3 months and half months away and a long waiting list after that !

I had an MRI scan on my back a few weeks ago as I have been having a lot of back pains and keep developing a lump in the mid back region that goes red all the time. My Doctor assumed it was the RSD that had spread but wanted to be on the safe side so order the scan.

During the scan, the radiographer told me that she thought she had seen what was causing all of my problems but wouldn't tell me what was wrong. Mum told my Doctor to chase things up and he called her Friday and said that they had found 'abnormal findings' on the MRI scan but because he is my Pain Management Doctor and not my Orthopaedic Doctor, he can't tell me what is wrong. The only thing we were told was that it could be something that I have had from birth or could have recently developed.

I don't have an appointment with my Orthopaedic Doctor until the 18th November so we are playing a big waiting game at the moment!

I just wish things could be easy for one. I'm not one to complain usually, but it is all getting on top of me at the moment ... i'm sure you all understand how that is !

I do hope you are all doing well!

Alison x

Dear Ali,

Does your ortho have a cancellation list? Maybe you can try to get in sooner by being willing to drop everything and go if they call you when another patient cancels at the last minute. It's worth a try.

So it sounds like there may be something behind all this? How intriguing....but scary, too, since you don't know what it is. Not very cool for the PM guy to just pass the buck to the ortho guy, IMHO. You've been going through the sycope stuff for a quite a while and could sure use an explanation.

We are all routing for you and wish you the very best. Once you find out what the issue is, you can deal with it. In the meantime, try to chill (easy for me to say, right??) Much love and peace, Sandy

That's really frustrating (and dumb, if you ask me)

I hope whatever it is they are able to manage.

I'll be praying for you Ali

Hi Ali, I'm so sorry you are going thru these passing out episodes. It must be so frightening. I've only had one, and I was so very scared. I spent a few days in semi icu. I was out an hour and half. But this is what I was told.
RSD is an autonomic condition. meaning our organs that we have no control over act out of character. The sympathetic nervous system controls the high blood pressure. The para sympathetic nervous system controls lowering blood pressure. Low blood pressure causes us to pass out I still have the up and down pressure, but doesn't go too low to pass out. I have a blood pressure kit that I use dailey.
Do you suppose you need to see an endochrondologist> It sounds like you have something off going on with your endrochrine glands.
Do you have to wait so long to be checked? I worry about you. Do you suppose you could write how many times a day you pass out and ask for an exception to be accepted for testing.
Let us know how you are doing. We have to be our own advocate.This many times passing out is not negotiable!!!. Please try to get in now. Your friend, loretta with big hugs

Hi I am so sorry for all you are going through. I know you are not in the US but when I have an apt that is far off I call every day to see if there is a cancelation. I have got into apts months early doing that. I suggest doing it for at least the Nov apt. As for the office that won't see you till your 16 that seems like a strange # to set. Is there someone you could call that runs the department?You are in my thoughts.

Thank you all for the replies and support, they are much appreciated !

My mum has tried to get an earlier appointment but we were told by the Orthopaedic Surgens Secetery that the appointment in November was the earliest appointment they had available. I did have an appointment before that that was at the beginning of December!

Unfortunately, the problem here in the UK is that our health care system means that we have to wait long periods of time for treatment. Some appointments can take up to 1 year to get !

I'm not sure why the other Doctors specialising in the Syncope wont see me until i'm 16. Think it's because it's an hospital for adults but it's soo stressful!

I just wish more could be done. I'm usually really good at dealing with things but lately everythings been getting on top of me. I've had to pack in college, don't see my friends much, am home tutored etc ... I guess I just want an easy life for a change ... I know you all understand !

Take care and I will keep you all posted!

Alison