Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-03-2007, 02:17 PM #1
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Default Neurosurgeon tomorrow..

...and I'm petrfied!!

I feel rubbish, have another pressure sore, the whole of London is under the strongest security level available in the UK, they are checking public transport constantly... and mum and I are going to have to attempt to cross London by public transport in rush hour..

and that's before I even get to the appointment. I am trying not to get too excited about it - I just don't think I can cope with another doctor who feels they cannot do anything, but offer to refer me on. Gr!

Oh well! so, please keep your fingers crossed for me!

Love

Froggsy xxxxxxxxxxxx
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Old 07-03-2007, 02:30 PM #2
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Frogga,
This isn't a good time to be in London. I know the feeling...after living in Asia for for 10 years, and Germany for 8, I know how scary these things can be. Can you take some pain meds before you go? We will all spread our arms around you and you mum, and no one will be able to hurt you without going thru us first. (the only bumpershoot I could find). Let us know how it goes.
Mary
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Old 07-03-2007, 02:33 PM #3
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Frogga,
I'll keep my fingers and toes crossed for you...
Best of Luck at the Dr's and on your Journey thru London..
Dawn
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Old 07-03-2007, 02:36 PM #4
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Quote:
Originally Posted by frogga View Post
...and I'm petrfied!!

I feel rubbish, have another pressure sore, the whole of London is under the strongest security level available in the UK, they are checking public transport constantly... and mum and I are going to have to attempt to cross London by public transport in rush hour..

and that's before I even get to the appointment. I am trying not to get too excited about it - I just don't think I can cope with another doctor who feels they cannot do anything, but offer to refer me on. Gr!

Oh well! so, please keep your fingers crossed for me!

Love

Froggsy xxxxxxxxxxxx
Awwwwwwwwww.. Froggsy, sweetie.. I am saying many prayers over this way for you! Why does The "Whole of London" have the strongest security level going on over there? Oh, my!! I do hope you and everyone there in London is going to be safe!! Froggsy, please DO NOT GIVE UP HOPE about another doctor who feels they can't do anything for you! They had me going everywhere, and finally... a Pain management Dr. who cares! I am sending your way much prayers, love, hugs and kisses down your way sweet one! Hugs Love, Desi
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Old 07-03-2007, 09:42 PM #5
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Dear Frogga -

I can well imagine what it must be like getting around under all that security. Very depressing actually. The closest in my expererience was after a very strong earthquake in LA and a month later the traffic is still crawling, the aftershocks are coming in and the water fountains are taped off due to the possibilty of contamination. That's when it starts to get on your nerves, or at least mine.

Good luck though on the neurosurgeon. I figure there's always a chance you can pick up some helpful information, even if there isn't an available procedure. And I don't know about you, but I find that nothing deflects my fears better than some information, even if it's only as to the trajectory of the projectile heading my way. Somehow I feel better just having the information. Do you know what I mean?

Mike
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Old 07-04-2007, 05:03 AM #6
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Frogga, please let us know how it goes at the ns, I'll keep my fingers crossed for you. I imagine you're quite emotional about it, I would be. It sucks so bad to have to relive your experiences with yet again another new dr..

The traffic is going to be awful with that high a security level, I agree with the suggestions you take all the meds you can before leaving the house... with spares for later, lol. I always take max everything before I go, it helps me cope. I can stay more analytical and logical, without all the emotion making it more difficult to communicate.

Michael and I had to deal with the post-9/11 crossings at the u.s.-mexico border in san diego. The biggest problem for me was being in line for many many many hours, with NO access to bathrooms

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Old 07-04-2007, 05:26 AM #7
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Default Fingers and toes

Well with Pn that can be a little hard,i've never tried crossing my eyes.
Ok i have and i just keep thinking my Mom is going to send some thunder.
she was so sweet but very much agains't crossing our eyes. I
hope you and Mum have a safe trip and help from your NS. Many Blessings
and Sue
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Old 07-04-2007, 02:52 PM #8
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Hey there Frogga, I'd cross my toes for you too but they hurt too much! I'll be thinking of you though and hope you get some good news for a change. Don't give up on the doctors though. I know it is hard but there really are some good ones out there. As you probably remember I went to ten before finding one. I guess you have to kiss alot of toads before you find a Prince. please let us know how it goes. jeannie
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Old 07-05-2007, 02:05 AM #9
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Hi,

Well. It was appalling..

When we got to the railway station mum smacked my hip really hard on the car door when she was lifting me out of the car, so that didn't start the day off that well! Then went into the station and discovered they'd lost my piece of paper which says I am allowed to take my wheelchair on the train. Finally arrived in London (after threatening the guards on the station) to discover it was pouring in rain and that because of the wheelchair taxis wouldn't take us.

FINALLY got a taxi to agree to take us and went up for my appointment. I hated the doctor on first sight and was abit surly. He was horrific! Apparently I definetly have RSD and RSD dystonia but he doesn't think I have "generalised" dystonia as a secondary disease (Which I knew), but he believes there are more important neurological components as my reflex tests were abit weird. He wants to admit me for 6 weeks to try and find out what is happening, with MRI's, CTs, spine taps, EMG's and anything else he thinks of and also I can then have physio and psychological support. HAHAHA. (Apparently I am too blase about being ill and don't take it seriously enough, yet 2 seconds later he said I should relax - he wasn't going to hurt me).

So... he lied. Basically. I refused to allow him to use tendon hammers, pins or anything else, so he just did it anyway and just sat there and watched me in tears whilst he did it. He finished and then said "that wasn't too bad was it?". Er it was.

I am so fed up with all of this. I don't care if I have MS, MD or whatever else he thinks is wrong with me. I want treatment and I want to get on with my life and never have to see another doctor again.

I don't think it helped that I called him a useless, arrogant a"$hole who I hadn't wanted to see anyway.

I can't believe he was willing to inflict that level of pain without permission, and refused to listen to me. So just imagine the letter that is going to be sent back to him from me.....................

I just can't handle anymore of this. It is driving me nuts. I hate doctors, I hate hospitals and I just want them to go away.

Love ya

Froggsy xxxxxxxxx
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Old 07-05-2007, 07:24 AM #10
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Aw Honey, I'm so sorry he put you thru all that. I was hoping maybe he had at least 2 functioning brain cells close enough together that they could communicate with each other. Sometimes we just hope. You had me laughing my butt off picturing you telling him off. I love it. What are you going to do next? there has to be someone who can help you. If anyone deserves decent treatment it is you. You are always up and always have your humour. Don't ever change.

Mary
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