Ness, I'm really, really happy for you! This is the best thing that could happen to you right now! I'm so glad to see that this doctor has given you hope for your future.

The lidocaine infusion sounds like a good thing to try. I know a few people who had them with good results.

Anyway, YIPPEEE!! I'm so happy you found a doctor who actually listens and cares! How rare is that??

Love,
Bets

VERY rare!! I know it, as I told my parents that I just wanted one doctor to sit down and listen to EVERYTHING, not form his opinion on what other doctors said and let me tell him my thoughts... they said it was unrealistic. It's just that. You cannot find that in the world today, except rarely.

But I DID!! I cannot believe it- I went in there and he LISTENED. He CARED. He wanted the best. To give me a better quality of life that I don't have now. I left crying with joy. At long last! And, something I kept saying I needed was a neurologist, who can deal with my RSD, whatever movement problems AND migraines. He specifically works with all of them. How cool is that?!!!

Thanks!!

Love you sweetie! xxxxxxxxxxxxx

Oh, and he is so worth the wicked, horrible vibrating drive up there! So, I am pleased! Hate the driving, love the doc!!

I forgot to tell you all about the EMGs-- I got the one done on Thursday, and the doctor did just my right side, because she said by testing just one side she could tell me if I did or didn't have a nerve disease.

They turned out normal. Yay! I don't have to go and get the next done, as I have a permanent dx of RSD now.

The EMG sure flared up my RSD!! OWW! I didn't quite realize how bad it was going to be... the electrical zaps of the EMG nearly killed me (erg! ), and then he needles burnt me half to death so I moaned and screamed through it... I am just so relieved that I don't have to go back. The doctor who did it wasn't real compassionate, and she just tore the EMG things (stuck onto my skin with tape) off, as I screamed! She kept doing it, though I explained the whole allodynia thing to her... she said when I winced and moaned in pain as she literally threw a sheet onto me, "I didn't even do anything to you!"... erg, she was hard to deal with, but I am alive, and kind of recuperated after that.

Ohhhhh, IHH--I just read you updated posts about your new Neurologist!

I can not tel you how THRILLED I am for you--to find a Doc who wants to know FROM YOU, the whole history of your problems. And NOT rely on the "questionable medical records/"OPINIONS" of OTHER Docs, who do NOT know RSD, andprobably spent spent less than 10 minutes with you, then put in the records that it was probably "psychogenic", or some OTHER, equally harmful statement. For, a MISDIAGNOSIS is JUST as HARMFUL, because THEN, you don't get the RIGHT treatment!

Ok--here goes--I am experimenting woth all the cool "smiley functions"....

WOOO HOO!

Fondly,

Sorry I hadn't said hi sooner and let you know how happy I am that you found a Dr. that is listening and is willing to help you. I am very happy for you.
I think because I have had one there for me for so many years I just keep thinking that there is one out there for everyone on here. I know that's not the case though from the friends I see around here that go through trying to find a decent Dr.

I must say though, I think most all of my friends around here that have the RSD and other major problems have found good Drs. in the past couple of years to help them and get them better. I have 2 friends that had back surgery last year, one diagnosed with RSD finally after years of not knowing and one I think getting better since losing his arm and all of his right side and insides. It just takes time and we have a hard time waiting for the right time.

I have had 4 EMG's and none of them showed anything. So that's not surprising. You see a lot of negatives on the TOS forum. But they sure hurt. I so agree with you on that one.

I hope he's able to help you with all you are dealing with.

Ada

Ada,

You were on methadone before, correct?? Can I ask you what dose you were on?

Thanks! It's okay you didn't say anything sooner... I know you'd be pleased!

Hope your night is going well!

Thanks, Desi!

My mom did all the driving... I cannot (legally or physically) drive yet. SO mom drove, we stayed over night, and we were so happy things went well.

I left crying with joy!

Hey there IHH.. I P.M. you! I want to say... YA-Hoooooooooooooooooo!!! God is good!!! yea for you and your new darling of a doctor!! Also, want to say how sorry I am about the shocks.. dang..these things hurt!! that lady who did that to you, by just pulling them off you like that.. well.. she needs to get her butt outta there!! sounds to me, she is unhappy with her so called job. Then she tells you, you don't have to scream, she didn't do anything wrong, sickens me!! Again, Ness.. I am truly so happy for ya sweetie!! Love ya!! Desi

I am on only 1/2 of a 5 mg. of Methadone 3 times to 4 a day. I had went up to a whole one for awhile 4 times in a 24 hour period but I have been getting TPI's and that has helped. I don't think I will be able to go off of it completely but I can keep my dosage pretty low.

The funny part is if I forget to take it, I know it. The pain is horrible. I did try to go off of it awhile back but once it got out of my system I was in a mess for about a 10 days. I won't try that again.

I got paperwork from the insurance I have today that I don't have to have any prior authorizations to get it now. I was having to go through that every 6 months but they changed their rules. I believe the group that was fighting them got it done. I was suppose to go up to testify but they did it with my testamony.

I still have to fight them for my Prevacid though. I'm gearing up for that round next week.

I really like it. The only side effect I have sometimes from it is sweating. people can't even tell I'm on anything compared to some of my friends and what they are on. At the 4th of July picnic some of them started drinking while on their meds. What a mess.

I hope you get to try it. I haven't PM'd you here lately due to how I have been feeling. This has been a very bad month for me. First with the VNS problems then the food poisoning and now the depression. Never ending.

I am so glad this Neurologist came through for you. IT shows we just have to keep at it until we find that right Dr. doesn't it?

Ada

I did want to add on to the issue of the Methadone. It can cause constipation. That's another reason I try to stay on a very low dosage. It might not be an issue for you. I have had part of my intestines removed so it's a huge issue for me.