[nikmcjo]

hey. i know it has been awhile.

but i have some good news

i went to dr today. we went to see our family dr/pediatrician/or whatever he is called. the other drs i've seen said they have done all they could do. we were kinda at a standstill (hand still contracted and immoble (going on like 3 months), blood pressure lower thank goodness but still high, big fatigue, etc) well, anyways, we went and he was VERY understanding. he spent like an hour w/ us. he said he had connections w/ an excellent rheumatologist who is hard to see. she comes into town like 2 times/month. he doesnt want to send me to drive too far too many times so he is gonna tell her about me and then i can see her when she comes into town. but in the meantime, he is gonna study ALL of my paperwork and see if he cant connect any dots. he said he is determined to help me. he said he will have a medical team work for me trying to find out anything and what to do to help if thats what it takes. i cried from joy of finally going to a dr who listens and understands me and truly wants to help. he believed everything i said and wasnt like "well, its all in your head, come back if it worsens, etc."

when i see the rheumo dr, he mentioned going to a hospital like 3 hours away frm us and staying there a week or so. it will be easier and less painful where instead of me going to a million different drs, they will all come to me and run whatever tests they need to run.

today was a really good day for me

nikki

[LMJunior]

Hi Nikki,
That's great that you found such a understanding doctor. Its so nice when you find a doctor that you can talk too and listens to you. I know I am always happy when I find a doctor that I can talk to. I will pray the doctor can help you get relief soon. Take Care

Laraine

[Vicc]

Hi Nikki,

I've pretty much stopped posting here but I still stop by and read what's going on, and I'm not too surprised that you haven't gotten a lot of supportive replies. We're all happy to see that you have a doc who has proven he cares, but for myself I'm concerned about seeing your hopes for recovery dashed.

I've been participating in RSD chats and forums for more than ten years and don't even want to remember how many hopeful posts I've read from people in situations identical to yours; there are really great docs out there, and you've found one, and that's great news; but no matter what specialist you see, no matter how many, RSD is still considered incurable.

I haven't gone back and read your posts, so I don't know how long you've had this disease. I don't know how many ups and downs you have been through with docs, but they can be as harmful as RSD when they're dismissive. You are so fortunate to find one who has real empathy, too many have been jaded by RSD; they believe they really are "fixers" and when they can't fix us, they begin to blame us.

Most don't think we're sabotaging our recovery, but they can't let themselves think that they aren't the healers everyone thinks they are, so they become brusque and begin to act as if there is something wrong with us besides RSD. Many of us have run into them.

Many here have seen rheumatologists in the hope they might have answers others don't, and we've been disappointed. They don't have the answer. No one does. But that doesn't mean there isn't an answer, because there is. No one has found it yet, but its there.

As a guy who had to cheat to pass my biology final (back in 1972), I'm surprised at how interested I am in the subject today: I have Dish satellite TV, which has three channels that emphasize a lot of medical and scientific research, and I "Tivo" just about all of it; and have watched knowledge grow right before my eyes.

Discoveries in one field have major effects on unexpected areas, and these discoveries are coming at an ever-increasing rate. One of these discoveries will help us beyond imagination, and I don't think its very far-off. I watch scientists talk about how something someone else learned triggered an insight for them, and they went on to some amazing discovery in an unrelated field. It will happen.

If you've read many of my posts, you know that I believe I understand the cause and nature of RSD, but whether I do or not makes no difference; I'm a bed-confined social worker and no one is going to pay attention. It really doesn't matter whether I'm right or not; what matters is that more is being learned about RSD all the time, and someday soon someone will find the right path.

Ten years ago, the literature on this disease had many abstracts denying that inflammation had anything to do with RSD; today, there are links on page 1 or 2 here at NT that discuss inflammation in RSD. I view that as extremely hopeful, but whether it is or not, the fact that new ideas are finally being presented is proof that people are actively looking in different areas. Someone will find the answer.

Meanwhile, I hope you can find fresh hope in a doc who cares, and who knows; maybe he will be the one to connect the dots. Someone is going to. Until someone does, however, the best ally we can find is a doc who wants to help us in any way he/she can. My greatest fear today is that something will happen to my doc; that I will lose him. He doesn't have any answers, but he has a good portion of empathy and I really need that...Vic

[RSD_Angel]

Nikki,

I am soo happy for you that you finnaly got a doc that will listen to you and take intrest in helping you fight RSD!! THere are many of us out there that have and hope that you are one of them for sure.!!

I see a Rhuemy and she has helped me alot with the swelling since it has gone in to my hands and elbows! She knows a little bit more then my gp about RSD and also spends time with me and i dont feel rushes ya know!!

No matter what others say on here, Im happy and keep looking for someone that can help you beat it!! if not you are only letting it win!!

)
Amber

PS others will post soon... its not that we dont care, just maybe busy or in pain!!

[ali12]

Hi Nikki
I am so happy for you - I hope that you get the treatment you deserve.
Always remember that there is no cure for RSD but there IS hope.
You look after yourself and I hope that all goes well.
Pain free hugs
Alison
-x-

[Auberon]

Hi Nikki,
I am glad our paths cross on a significant positive. Many more good days to you.

Not everyone sits & cogitates their own theories, (sorry Vicc) but even if you are right there will be a time factor like the timeliness of RSD treatments if there is such a beast. I read to see if I can support or help you folks as well as myself _ I have a really strong personal motivation to find ways around this rotten thing.

Nikki, It is just wonderful that you have found a doctor with such an attitude - that is a big part of the battle. It really does help. I am so happy for you & hope like crazy that you make significant gains.

Amber is right - I had a long trip & a long appointment today - it is now 1.16 am and I am still awake from the pain but I collapsed for the afternoon.

Relief from some symptoms is possible in a team environment & let's face it, every plus helps make your quality of life better & that is what I hope for you.

The researchers are taking us seriously. I have pulled several articles from Science Direct/Elsevier & have been applying it in the field for 20+ years. Regrettably I can't relay them - they are quite bogged down in the microbiology and biochemistry of the nervous system & they are exclusive for the bod who buys them.

Nikki, just be wary of the fact that a doc is not a god but they are a paid consultant working for you and as Vicc said no-one has the answer YET but it is getting closer & your personal outlook can be improved with the right doctor & team working together.
Mate, don't lose hope & assume its lost......I believe snippetts of the real picture are around the corner - perhaps closer than many might think.

I apologise for this statement but make it with sound reason.
I continue to read the full articles (consider it on behalf of everyone here) & have learned the systems approach to the mammalian system through formal training which has been applied for many years. I am not new to finding meaningful data & processes to apply in technical fields that has been conducted using legit experimental method.

Nikki, I so wish you a better outlook - working in a team in a close environment like this might get you somewhere & you always have the guys here to run it by. There are some pretty clever bods here with a tremendous understanding of anatomy, physiology & biochemistry and as a rule we are on your side.....hoping, praying (if that is how you work) and researching the genuine science to find some relief.

Ignore the negative comments, they are simply just NOT what any of us need.

I have recently found & purchased some very encouraging articles on the role of Mast cells, T cells & inflammatory responses as well as "Psychoneuroendochrine stress response may impair neutrophil function in CRPS" Kaufman et al, "Evidence of small-fiber axonal degeneration in complex regional pain syndrome - 1" Oaklander et al; "Increased seroprevalence of parvovirus B 19 IgG in Complex regional pain syndrome with antiendothelial autoimmunity" Oliver et al. "Peripherally -triggered CRPS and dystonia" G.D. Schott.

Seriously, these guys are trying to help us, its just that nerves in-vivo are so hard to study. It is only in the last 20 years that we have had the technology to contrast each kind like afferent and efferent neurones in living tissue & study them with adequate contrasting electron-microscopy without killing them off & this is still limited. Even tho' Silas Weir Mitchell identifieid it so long ago the technology just has not been available to study nerves - the best nerves we could study were those of deceased giant squid - great relationship the the human autonomic system in its higher order of operation. They are gradually focusing in on the whys' now the how to's will start to trickle through. That is how reductionist science works & it is the only way it can with our current level of technology.

It is just possible that each kind of nerve is attacking or neatralising its own signal & physically, with the aid of killer T cells knocking one another off - a team of heavies coming to you OH WOW!!!! How would we all feel if they arrested that?

Guys, unfortunately I cannot publish these articles in a public forum - I buy them under the condition that I am a guest to the site & if I replicate them I will blow my access to these simply wonderful assetts and then none of us get to use these wonderful works. Don't think I have money - I go without other things to learn about this hideous disease we have - my life is worth it.
I, too live on what we call in Australia, the Statutory Rate which is below the poverty line in this country so I too sit & wait for Insurance Co approval before I can get anything done.

Vicc - I am NOT having a go at you....that is how I research & we must accept that we use different methods. Through employment until this RSD thing grabbed me I researched and applied hypotheses and was very adept at applying data in real ways - my jobs were to make them work if they had the merit to get up and go.

Nikki, I hope I haven't stolen your thread but I fealt I had to qualify some of the things I said given some of the things that have been said here in response to your post and here in the past.

I just hope you make some wonderfully quality of life giving gains - the bigger the better from a coordinated team of medical heavy-weights pulling together.
Sorry about the spelling it has been a REALLY big day out.

Genuine hugs and success to you Nikki
Auberon

[tayla4me]

Nikki,


How wonderful that you have found a doctor who listens. This is half the battle over I believe.
I hope that with his engaging manner he has loads of knowledge to go with it and between the two of you good things will happen.
We must never give up hope as there ARE people out there who do care and who do indeed study this disease with the intent to make our lives easier to endure.
Very best wishes
Tayla

[Vicc]

Hi Auberon,

I understand that my view has few proponents anywhere and none here, and I usually see that as an opportunity, but not here. My reply to Nikki was intended to be supportive and realistic, not an introduction to my views on the nature of RSD.

I don’t mind debate, but debate here hijacks Nikki’s thread, and that has happened to too many threads already. In the past I’ve replied with some defense of my view, but I won’t do that anymore; it makes me a hijacker and it certainly doesn’t help whoever started the thread.

I am still working on more posts in my IRI series, and that thread would be an ideal place to continue this discussion. When I post them, everyone will have a clearer understanding of the reasoning behind my views, and perhaps that understanding will resolve some seeming differences…Vic

P.S. I see this appears brief and blunt, and that wasn't my goal; I just wanted to say it as quickly as possible and put it in the past.

[Desi]

Hi Nikki! It is so heart warming to hear this!I am so very happy that you found such an excellent doctor who is willing to help, work with you!! Much luck and I only want to wish you the very best! ~Love, Desi

[nikmcjo]

Thanks guys to all of you Your support is wonderful

Ill keep you updated whenever we find out more about this.

Hugs to everyone

Nikki