Sharing good news!!

Desi · 10-19-2007, 06:27 PM

Hello all!
I have some really great news!! I think I am going into remission!! I called to ask my pain man. doc. if I can go off my time released morphine(Kadian) he said instead of taking 2 of the 60 mg. of the time released morphine today, to just take one. He then said to call him on tues. and he will lower the dose!! I then asked him if I could get off the 800 mg. of neurontin that I take three times a day. He said,"now, that's a real monkey on your back, and to STAY on them! I wonder why he will not lower that??
Now, I had a Stellate ganglion nerve block done two weeks ago. I go back again to get the 2nd. one on October 25th. Now, this is great... I couldn't lift my RSD arm over my head since March! Well, yesterday, I lifted it.. no pain!! NONE!! Friend's please keep me in your prayers as this could indeed be in remission. thank you all so much.

I am so very amazed and excited about all of this!! I have also been in PT along with the blocks. Yes, it is hard work, yes, I had some flares while in PT but, I wanted this so bad and I worked so hard on getting to where I am today.. so blocks, medication and PT worked it's wonderful way on me. I am hoping that this "magic" stays!! I am so excited, I wanna shout out to all my neighbors.. hey, think I will!! LOL Love ya all, thanks so much for your on going prayers. and your e mails, PM's mean a lot too!! ~Love, Desi

lostmary · 10-19-2007, 08:28 PM

Desi,

YEAHHHHHHh

That is great news. Do you think the blocks did that? I'm so happy for you. You always have such comforting words for everyone. If anyone deserves an improvement, you do.

hang in there friend, it sounds like you are getting better.

hugs
Mary

10-19-2007, 09:41 PM

Dear Desi,

I am soo VERY VERY happy for you. You are such a joy. Much Love, Roz xxx

Desi · 10-20-2007, 08:43 PM

Hi Roz,
Thank you so very much for your kind reply back to me. Your a real sweetie!! Love ya~ ~Desi

InHisHands · 10-20-2007, 09:14 PM

This is so great, Desi! You sure need a good break, and I hope it lasts a long, long time, dear!!

Love you xxxx and keep looking up!

I am glad you'll stick around-

!

Desi · 10-20-2007, 09:22 PM

Hi ya Ness!!
You my dear have always been there for me with your kind and sweet words!! I really look up to you, as you have and still always help me so much!! Love ya, sweet Ness!! ~Love, Desi

Imahotep · 10-21-2007, 06:26 PM

This is great news and is what we all need to hear once in a while. Best of luck and I'll keep hoping for you.

Be sure to come back and let us know your progress even if you get "completely" well.

Desi · 10-21-2007, 07:20 PM

Hi ya! thank you so much for your reply back to me. I sure will still stick around to help in any way I can. This NT board helped me get through so much, gave me such good advice.I hope that I continue to get and stay well. I am having another stellate ganglion nerve block done October 25th. and then another one, so hopefully this will keep my remission at bay!! ~Love ya! Desi

Quote:

Originally Posted by Imahotep

This is great news and is what we all need to hear once in a while. Best of luck and I'll keep hoping for you.

Be sure to come back and let us know your progress even if you get "completely" well.

Desi · 10-19-2007, 11:50 PM

Hi Mary!! I believe the blocks played a "HUGE" role in my getting better. That and prayers. mary, your always there for everyone, and for that, I thank you so much!! How is the SCS doing for you, my friend?? good I sure hope! I hope that my Dr. has some good news when I go back to him on the 25th. of October. I want to just hear the word: "REMISSION"! Yea!! LOL Love ya so much my good fiend, mary! ~Love, Desi

Joselita · 10-20-2007, 02:09 AM

Desi,
Oh...I have my fingers crossed that you have achieved Remission! Not only that you have achieved it, but that you will STAY in it! I am SOOO Happy for you!

I am glad that you had blocks done. I hope that this next one pushes you over that cliff into Remission FOR SURE. I am SOOO glad that you got your DX so quickly, and that your doc sent you in for Blocks during your “Magic Window” of opportunity. I have wondered if docs have stopped giving their patients blocks...because I don’t read about many folks getting them on here anymore. I have wondered and wondered about that, because that is the ONE thing that I have always heard and read about that can help to get a person into remission. And, REAL Remission, where they don’t need to take a bunch of meds, because THEY AREN’T IN PAIN anymore! The trick is to “Catch” the RSD quickly...and that is why it is so important for people to get a quick dx. Like you did. SO many of us aren’t so lucky. I didn’t get my dx until I had already had RSD for about 18 months or so. Way too late for any hope for Remission. But, I am still pretty lucky as for some strange reason Blocks still do help me somewhat. Even after 11 years of this stuff....they can still help to at least get things calmed down for me a little.

Please, please be really careful with yourself. Remission doesn’t mean that the RSD is “Gone” totally. Remember, there isn’t a Cure. There have been folks that got into Remission, but then wound up having RSD come back after they got some sort of injury. From all that I have read and heard, if it comes back like that, it seems to be “worse”, and harder to treat. This doesn’t mean that you should live in fear, and keep yourself closed off and in your house, avoiding doing everything for fear of getting hurt and having it pop back up again. NO! You should get out and ENJOY life...and take advantage of this WONDERFUL opportunity that has been given to you! Just be a little careful, you know?

I think that maybe your doc is not wanting to rush you getting off of the Neurontin, because of any help that it is/has been giving to you. Maybe he is worried that coming off of EVERYTHING too quickly will hinder the progress you are making. If the neurontin has been helping your pain....and is STILL helping to keep things calmed down....maybe he is worried that getting off of it too quickly would cause the RSD to rear it’s ugly head back up, and then mess up your VERY GOOD chance for Remission. Probably, he will want to at least to this other block (maybe another one or two..? To try to make sure things STAY calmed down? Are you in the midst of a series of them? If so, me may want to finish out the series), and then SLOWLY wean you off of you meds, and keep a close eye on how you progress. You will have to be SURE to tell him if you feel ANYTHING “twinging” in an RSD type of way, while all of this is going on, so that he can jump on it ASAP and try to keep it from getting back like it was. Don’t IGNORE anything, as we can so easily do. But, don’t be scared either. This is a WONDERFUL thing!! I am soo happy for you! It sounds like your doc has done everything just right...and that he is trying to not to rush things, while keeping your forward momentum going.

GOSH! But I am so happy for you!! Please please promise to let us know how you are doing...and how you are doing after this next block....and how you are doing as you start to wean off of the Neurontin! I won’t ask you to promise to keep on posting here after this is all over and done with, as I would HOPE that you would be out ENJOYING life and this gift that you are being given, instead of stuck in the house and on the computer still. That isn’t to say that we wouldn’t want to hear from you....we would and DO! But, I have been around long enough to know, that once someone gets into Remission, they don’t really want to keep on coming back here. And you know what? THAT IS OK! I am happy for them, because that means that they are doing GOOD, and that they are out ENJOYING and LIVING Life! (And, I know that I am not the only one that feels that way, either!)

WOW! This was such a GOOD Post to see here! YAY!! It always makes me so happy to see this happen for someone! I am so glad that it seems to be happening for you!

Keep us updated on your progress, ok? I know that you have LOTS of folks here that have their fingers crossed and that are sending up good thoughts and prayers for you!

Jose

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