Time To Move On
 

Dear Folks,

God has moved many mountains for me.

My DX is RSD type 2, the only hope I was given by most MD's was a wheelchair.

Like Andrea, I was in a sink or swim issue. I have permanent heart damage now I just didn't want it to happen to anyone else.

Everything I said was 100% taken out of context, by a couple of you.

I have been very blessed to of had my pain levels go away, where I know longer need pain control.

I have fought a long hard road to get my life back. I am PMing a few but that's it.

I hope the one's that want their life back find their way. Shalom, Roz

Best of luck.

Please check in once in a while.

Not Godbye
 

Roz,
I want to thank you for all your information, time, caring and support! My arms a pretty bad, so as usual I'll have to keep this short. I am really sorry you feel you have to leave. I, for one would love to see you hang around! You have both informed us to the best of your ability and have been supportive as well. I don't always..ok, most of the time... communicate in writing, what I feel in my heart. The more involved each of us become on this forum the more likely we will say something that someone does not understand, or feels offended by it. I can tell you that from experience. Each of us here are doing the best with what we have. That includes you. If you leave, please keep in touch and let me know how your treatment progresses.
All the best DI

Diana,

I am out of pain, but it took much more than antibiotics to get my life back. several other different meds. as well.

On a very serious note, the roughtest bridge I ever walked.

When the going got tough, I got tougher. Hugs, Roz

Thanks
 

I'd like to know your full treatment. If you are willing to share with me. I'll pm later. I am struggling with my right arm.

Dear Roz,

Lyme disease is an epidemic where I live - I know quite a few people who have struggled terribly with it. One of my best friends miscarried because of Lyme and never was able to have get pregnant again.

I am really, really glad that you are finally better AND YOU HAVE A LIFE BACK!! Do you know how great that is? Enjoy every moment of it!

XOXOX Sandy

Dear Sandy,

I am very thankful to my MD, she is alot like House. It was alot more than lyme going on with me. I have at least another year of treatment. Hugs, Roz

Roz I am truly grateful for all you have done for me, and will follow up on the information you supplied. For over 20 years I lived in the boonies with deer and deer ticks everywhere, so it is highly likely that me and the ticks had run ins and probably more than once.

I am sad to see you go, but do understand your reasoning. Just remember you will always be in my heart and prayers :hug:

Roz,

I am so sorry that you feel the need to have to leave the forum as you have helped so many people and provided lots of interesting articles about RSD and Lymes Disease that were really interesting and I know, I for one, learnt a lot through those articles so thank you!:hug:

I wish you could stay here at NeuroTalk and help get your message accross to many other people as I feel it is really important and I feel that it would help many people, although I do understand that you are a bit sad and frustrated about some of the messages that you have been getting via PM. Please don't think though that people don't want to get their lives back ... I think they DO but it is SO hard trying to go and see other doctors when several doctors have diagnosed you with RSD and you think that they are right!! I KNOW that I have RSD as I developed it after an ankle injury and it later spread to my right arm after I fell and sprained my arm so I wasn't bitten by any bugs!

I can't tell you how happy I am to hear that you have gotten some much-needed pain relief and that you have gotten your life back - that is totally awsome and I wish you a life time full of pain free memories!!

All the Best and thank you for everything.

Alison.

Why?
 

Hi Ali,

I agree with you that it is very sad that Roz feels that she needs to leave the forum. I believe that there is so much we can learn from her experience and that Roz's passion in reality reflects her concern for all who are suffering from this terrible illness.

If you reread past posts, you will see that Roz too had an injury that resulted in the RSD diagnosis; but what I think she is trying to point out is that a prior infection (Lyme in her case) predisposed her to developing RSD ... and if that illness is lingering in one's system, how can they ever get better.

There is an RSD doctor who would agree with her ... in that he believes that there is in fact often a chronic, sometimes hidden infection that causes and then perpetuates RSD. If you go to www.robertgschwartz.com and click on the RSD link, you will find lots of food for thought.

Ali, we can never accept that the status quo thinking about RSD is acceptable. We all must be open to thinking outside the box. I am part of this site on behalf of my 17-year-old daughter, who like you was diagnosed with RSD when she was 13. She has benefited immensely from hyperbarics ... but this infection connection, as well as other possibilities, needs to be investigated. I for one cannot accept that this a life sentence. One thing that sends up a red flag for me is how many of you young suffers developed RSD at the age of 13, as was the case with Andrea. How much research has been done into the hormone connection? Ali, please never stop asking WHY?

Best wishes, sweetheart!!

Jeanne

Thanks Jeanne!

My Doctor is currently doing a lot of research into RSD as he is a member of the British Pain Society and I am part of a study about the really bad myoclonic spasms I am getting in my RSD limb as he says they are the worst he has ever seen in 10 years of treating RSD!! My Pain Management Doctor is also doing a lot of research into Hormones and RSD as he believes that they pay a huge impact into RSD as a lot of middle aged women and teenage girls usually develop RSD and not that many men.

Over here in the UK, we don't seem to have that many Ticks. They usually just live in the woodland and we don't have that much of that near where we live. We wont ever give up asking WHY I got RSD and both myself and my mum do a lot of research into RSD to try and inform ourselves the best we can however I honestly don't think anyone will totally know WHY they developed RSD!!! My Doctor believes my RSD started immediately after an injury as I NEVER had any problems before that and the pain and swelling started immediately after the injury.

We will keep on researching though and hopefully one day, we will get some much-needed answers!

Thanks again!

Dear all,

Thank you Jeanne for this very kind thoughtful post here. I agree with you totally about that we need to keep asking WHY? I too think that there could be a hormone connection to this. In addition to young people being diagnosed with this during puberty, the median age of the majority of those (mainly women) diagnosed is 42 another time when hormones are changing. I sure wish I had a Dr. Robert Schwartz here. I will always ASK WHY and will never accept being disabled is my fate. Each morning I wake and do daily affirmations that support the belief that I am a healthy whole person and that each day I am getting better. I am so sorry that your young daughter has to go through this and I truly hope she is able to find the right answers and relief.

Ali, I am always very touched by each supportive caring posting of yours that I read. I wish you did not have to go through this at all. You are such wonderful person and we can all learn more about compassion from you as we travel this journey together.

Roz you have been such a terrific inspiration to me and I am very very sad to see you go.

I hope this gives opportunity to better understand the need for us to be supportive and encouraging to each other.

We all have different experiences, differences of opinion and it is my hope that we can share those in a respectful way and continue to lift each other up.

Much love and peace to all.

MsL

Hey Roz

you are a valued member here and I hope things are now resolved so that you wont feel the need to leave. the forum benefits from your experience as well as the support you show to others. i hope you decide to stay but wish you only the best whatever you decide.
:grouphug:

I am so sorry to hear that. How long have you had rsd? God be with you. I can sit here and tell you I am sorry that that has happened and sit here with tears running down my face. I don't know you very well but this should never have happened to any of us.Sometimes life is not fair, but I do give you my best wishes. Good luck with everything.

Sincerely,
Tracy(screwballpookie)

This whole thing is horrible. :eek:Of all of the hurdles that we face, a lot of people feel that this is a safe place, even when we agree to disagree. I hate to think that you will be leaving as you bring so very much to the forum. Just consider re-considering.

Hi Lordwood,

If your up for it, could you please read DR. Schwartz website. Much Love, Roz