For Ali and other kids
 

Hi Ali

Just wanted to make sure you saw this video

Debbie
http://www.rsds.org/4/youth/alissa_video.html

Thanks
 

Hi there,
Many thanks for posting this video - its quite sad but its amazing how better the girl got in 8 weeks. These videos help you to stay strong although times ARE tough and its right, RSD doesn't just affect the patient, it affects the whole family ((hugs))
Love and many thanks
Pain free hugs
Alison

Hi Debbie and Ali,
 

I watched that tape all the way through. She did a very good job of explaining what it is and what she went through in simple terms.

I wonder if she knows what remission is. I would think that is what is going on with the girl. If she injures herself again will it come back out.

Ali, I do believe it can be put into remission and believe me it's not a one day, one week, one month, or one year task. It took me and my Dr. about 6 years to get me there.

That Dr. reminds me so much of my PCP who I consider one of my best friends and Bill just loved him. He wears very colorful ties. On the 25th of every month he wears a Christmas Tie and can tell you how many days there are until Christmas. One year Bill got him this tie in Ky. with women in short Santa outfits dancing and I swear he wears it. He wears Disney ties, you name it. There are Drs. out there like she met. You just have to keep looking for one that cares. A lot of them are from the old school but we do have some younger ones out there that do care. You just have to keep looking until you find one that wants to help you. When I first got sick in 87 it took me 3 years to find my PCP. The man learned about RSD to help me get through it and sent me out to the right Drs. to get me the help I needed.

If a person could have seen me in 98, they would have thought I would be dead within a year. My friends were worried sick about me.

The reason I am telling you this Ali, is that I want you to understand that you can get better and there is a light at the end of the tunnel.

One thing I tell people is to stand up for yourself. I have had Drs. drop me for telling them what I think, some admired me for it. I saw over 50 Drs. maybe 100 in my qwest to get well. I would have to go through my records. My caregiver put them in year order and believe me the thickest is 98 through 2004. Of course I don't have them all from the years back to 87 it seemed a hard time for me even without RSD. Back to the subject, don't stick with one Dr. or one Hospital just because you live close to it, just because you like the Dr., that don't always matter.

You will get better Ali, it just is going to take some time.

Debbie, I hope you are doing better. That was a great tape for anyone. Kids or Adults. Thanks for it.

Ada

Ada,
 

Hi Ada,
Many thanks for your kind words. We are going to see my PM doctor tomorrow, so we will let you know how it goes. I really hope that I will find a good doctor.
That doctor sounds like one of my teachers I had at primary school, he used to wear Disney ties with Mickey mouse on them. He always loved his bright colours. It kind of cheers me up a little bit when I see nice and funny ties.
My leg is really painful today, I am making a pain diary and going to take it to my PM doctor tomorrow and see what he says. If he is still nasty to us we will ask for a referal to another hospital.
Take care
ALISON
-X-

Hi Ali,
 

Do let us know how it goes tomorrow. If you walk out that Drs. office not feeling good about what he says or does then get right on looking for a new one.

I'm glad you are doing that diary. I did it for about 3 years. I filled up one diary and started on another one. You know though I can't bear to read that thing today. It just brings up too many bad memories.

I would ask that Dr. for some Lidoderm patches to put on your leg. Those might help some, I use them often and they do make some difference.

Good luck tomorrow.

Ada

Hi Debi and Ada,

ADA - Of course I will let you know how I get on at the hospital tomorrow. I really hope that it will go Ok. I too find it scary looking at the pain diary, but I thought it would be a good idea for my PM doctor to see how much pain I am in and hopefully he will get something sorted - if not I will ask for a referal to another hospital.
Thanks for your help
Alison

Debbie - Many thanks for posting the video - it was so kind of you, I really appriciate it.
Thanks Alison

Good Luck
 

Hi Ali,
I wanted to wish you good luck tomorrow at your doctor visit. I sure hope he can help you and you can get relief soon. I will say a pray that the visit will go good for you Ali. Take care

Laraine

Hi LMJunior,
 

Thanks for your kind words I really appriciate them.
My doctors not the best doctor in the World (I don't like him), we are hoping to get a referal to another hospital. My PM doctor caused me to develop RSD in my arm and he performed a nerve block that caused me to lose my balance.
I hope you are Ok
Take care
Alison

hey ali i hope things went ok
having a bad doc is a major downer i hope you get thatt referal to one who makes you feel comfortable throught this whole arguous process.
how is the balance stuff going after you got off the baclofen. i had to take that stuff last week after a traumatic block and it really messed with my balance...i got off of it a couple days later but it took a couple of days to balance back out.
anyway i hope things are getting better for you...you are way to young to have so much experience this disease
hang in there

Hi Wakegirl,
 

Thanks for your reply. I am still having balance problems, its made no change taking my off the Baclofen. Apparently my PM doctor took me off Baclofen because I had an abnormal posture (however I still do now, its a side effect of Dystonia) I am sick of it now, I say to my mom that I wish I was dead because of my problems, I am starting to get pretty depressed.
My moms posted a message called 'Just back from hospital' it tells you about how it went. I am really not happy with some of the stuff that my doctor comes out with and my Physiotherapist talks to me like I am a baby which does not help. They think that my mom is scaring me by telling me stuff about my nanans MS, she is not, I do have a right to know about it. I really hope that I can get a referal to another hospital. My PM doctors upped my Lyrica, I am now taking 150mg instead of 75mg. So far its made no differance.
I am going to the hospital next week because I am seeing a girl who suffered from RSD, but I am not sure whether I want to go again after that.
How are you? I hope things are better for you
Take care
Love Alison