Update & Weekly Discussion-RSD & Undereducated Medical Professionals

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From: byrd45 (Original Message) Sent: 9/24/2008 11:24 AM
Hi Everyone,
I have been missing all of you terrible and thinking about everyone at group and promised myself that no matter how I feel today I was going to post so here I am. First thank you so much to everyone who posted on my other message or read it but couldn't post I know how that is... I tried to leave a message there but MSN refused to allow it so I had to go into my manager tools to send this out. Raspberries to MSN that isn't going to stop me today either! Things are still going rough and from what the specialist said to me on the phone today could be for awhile. I went to an appointment with the neurourologist I think I might have mentioned that was coming up but not sure. Anyway she was great and new what was wrong with me it is called interstitial cystitis or IC. The doctor said that is when the mucous layer that protects bladder wall can be damaged or irritated and this allows irritating substances in the urine to inflame the wall of the bladder causing the person horrible pain. She gave me a small hand out about the medicine I am now taking which will act as a buffer preventing the irrating substances in the urine from reaching the bladder wall. Over time it helps replenish the lining and then the pain and irritation is resolved if everything goes as it should. It can have some rotten side effects but I'm hoping I won't have to deal with them. One is hair loss,not permanent, if it becomes a problem they take you off the medicine. I hope that we don't even have to worry about that and refuse to think about it unless it actually starts happening. The only side effect so far is extreme dizziness and although it makes it hard to walk or sit up I'm working through this and hoping it will get better as I get used to the medicine. The doctor wasn't sure if there was a connection between this and having RSD because she said there isn't any information out there on RSD and the bladder,so I called Dr. S and asked and he told me that it definitely is caused from my RSD and he has a bunch of patients with it also. He also agreed that there really isn't much information out there but there is one paper and he wrote it on RSD and IC. It didn't surprise me at all I feel that RSD just keeps adding more and more problems to an already long list of what it has caused. I just really wish that there was more information out there for the doctors themselves and us too. It just seems that teaching wise they are still way back in the dark ages if that isn't their particular specialty. That really starts problems for us the patient when we need a doctor for a skin problem,bladder problem,or other specialty and they don't have full knowledge of RSD. Sometimes it is okay and they can diagnose you even without knowing the ins and outs of RSD yet there are other times it would definitely benefit patient and doctor for that information to be readily available to everyone. After having RSD for 7 & 1/2 years I still wonder if I will ever be able to go to another doctor besides my RSD specialist and have them be able to treat me without scratching there head at some point and not fully knowing what to tell me.That is really unnerving to me as a patient,how about you? That sigh that hangs in midair when they just don't know how to answer your questions you know what I mean. Since we haven't done a weekly discussion in awhile because of my health I thought this might be a good thing to comment on. What are your feeling as an RSD patient about the information out there for medical professionals and how do you think that can be changed in the future. Also what are your personal experiences with inexperienced and experienced (meaning knowledgeable about RSD) and how it helped or hurt you. In my case, the doctor I just saw, couldn't in good faith tell worker's comp when they called that the medicine she prescibed was for a condition related to RSD which meant they denied me and I had to pay for it.I was pretty upset at first and called her up but I see why too how can she say it is when she doesn't have any data to reach that conclusion. I asked her to talk with my RSD specialist and she was polite but we both agreed the best thing to do would be to ask him to write me a letter since he has the research and knowledge of this. RSD always makes me feel like I am caught in the middle. Similiar thing happened when I developed high blood pressure a few years ago which was also from my RSD. That time my cardiologist a dear friend of my mom and dad's was somewhat knowledgeable about RSD. When he found out I had the disease he started reading up on it just out of curiousity since he didn't know what it was. He educated himself that touched me to know he took the time to do that. I wasn't his patient back then, but ironically enough became his patient when I started having the problems with my blood pressure and they wanted to check out my heart. It turned out that he found I did have high blood pressure but not the normal way most people get it. Mine was high as a reaction from the nerves in my chest swelling and squeezing my heart. Which is why I was having chest pain and shortness of breath to along with the elavated pressure readings. He said that it would need the same treatment blood pressure medicine however twice a day so the swelling wouldn't have a chance to get ahead of the meds and he also told me it was from the RSD. It didn't matter though Worker's Comp still refused to pay for it anyway saying that someone couldn't get a problem like that from RSD. I cried after that I was so frustrated then paid for my meds because I like my heart and without them the doctor said the constant squeezing would lead to an enlarged heart. The cost of the meds was a smaller price to pay so I pay that once a month. I think they should make it a mandatory part of all madical personel to learn at least a basic course about RSD. Depending on how far your medical training would go would determine how much more knowledge you would need. Like if you were a nurse's aide the basic course would explain patient handling,bathing,needs etc.Nurses would take that plus an additional course on iv and bloodwork etc.you get the idea. I think this would help the knowledge levels out there a whole lot. What are your thoughts,ideas,or experiences I would love to hear them just add them to this post.



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From: shellie Sent: 10/1/2008 1:54 PM
I was told by my lawyer that most doctors do not recognize RSD. He also said that if I took the accident to court that the jury would not understand and award me nothing for all the damage to my neck and made me settle for the medical fees and his fees so I get nothing.

I really wish Dr would get smart and post their findings of RSD in one spot on the web so we as patients and our Dr that do not know crap could go there and find answers.

Also has anyone have a NVC test done during a flair to find there is damage and then a few years later when not in a flair it shows no damage? Strangest thing for one test to show it and another to be normal. Anyone have a thought on that?

Things are going to be just fine next week. It will take and you will be able to tell us how much better you feel and have motion back with less pain. God will watch over you.

((((HUGS)))) Shellie


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From: Liz3079 Sent: 10/7/2008 9:11 AM
Hi to everyone

Ive been reading posts but thought today I should check in also.Hope everyone is doing ok.Rainy today.Fall is here for sure.Cooler weather .

I know what you guys both mean.Its really really sad rsd isnt taken more seriously but you gotta stop and think to someone who has never experienced it probably thinks we are all nuts coming up with all this stuff going on all the time with our bodies.I was very skeptical about all this when the dr first told me I probably had it and I started reading about it.But after 4 yrs of suffering I do believe rsd exists.If only more drs would read up on it or like you say take a course in rsd so they would be familiar with it.I was always so healthy till this came along. My whole body is falling apart.

Shellie I also had a nerve conduction test come up positive the first time for moderate corporal tunnel on my bad wrist and the second time when workers comp wanted me retested it came up that I had nothing wrong. I had a flare up for several weeks from the needles and I cried when they had to stick the needles in my arm but I just wanted to prove to wc I had something wrong.I went through all that for nothing.Its really ashame you will get nothing but dont feel bad cause I didnt get much either but I did get open medical which I need to see a dr.I guess I will pay someone to take me.It will cost an arm and leg but Im not driving to Mo.I just cannot do it in all this pain.

My friend who has rsd says the wc dr. did a bone scan and told her she had rsd.She said the drs told her not to use her wrist so after 3 yrs of not using her hand at all she now has swan neck deformity and she wears a splint on her hand all the time day and night.It doesnt do a single thing for her hand .She also wears a compression glove.Shes getting ready to settle as now she has no job as she says the electricity in the machines at work makes her stimulator go crazy.So she has no money coming in.I told her she could get food stamps but she says she wouldnt stoop so low to do that. Geez I got them for awhile.Its better than no money for food.I think her family will help her though.I dont see nothing wrong with getting food stamps or help.Ive done it before and I wasnt one bit ashamed to do it and would do it again.

Well I will go for now.I am like you Robyn I miss everyone here cause its like a family to me.You guys all take care.Hang in there.

Love and hugs
Liz