Something To Think About
 

Hi Folks,

Just a thought, the problem with an RSD, Fibro and CFS DX's etc.. you get DX, and your treatments are just to cover the SX's

In other words the MD's need to keep looking for the cause, but most don't.

Hugs, Roz

Roz,
You are so right. I don't know if I can wait for them to find a cure. Sometimes I don't think the Drs really care. They just pushing the meds.

Sue K

Dear Sue,

This is my hairdressing opinion, only about 20% percent will even think out of the box. A VERY few will go out of it, not even 1%.

So in other words, you need a MD as sharp as a tack, and are willing to take their oath seriously. They not only think out of the box, they go their as well.

Don't give up. Much Love, Roz

Hi Roz,

Do you think that you developed RSD because of your Lymes, or do you think that the RSD was totally misdiagnosed?

Yesterday I talked with a mom in our area who has a 27-year-old son who has had Lymes for 10 years. Back when it all started they were told that he was mentally ill. She said that doctors put him on every "anti" med possible, anti convulsion, anti depressant, anti psychotic. It was not until he ended up on life support that they realized that he had Lymes the entire time. She called me because she heard that we use a mild hyperbaric chamber for Sarah's RSD, and they are looking to buy one because hbot has helped her son as well. The horror stories of Lymes and RSD patients have many similarities ... leaving me with lots and lots of questions. I sure don't want to learn 10 years from now that we too were "barking up the wrong tree".

Keep on pushing us to demand more.

Thanks,
Jeanne

Dear Jeanne,

I do hope these lines find you NOT WORRIED. If she has Lyme she will get her life back with the right treatment.

I need to explain alot more on a personal note.

When I was growing up my immune system was weaker than the average. I love life.

I was bite by a tick apx. 2 1/2 years prior to my RSD DX. The tick was embeded in me, or I would't of believed I had LYME myself.

Most people never known they were bit even.

cont..

Lyme's is a fairly easy thing to diagnose when you order the right tests. It is a real train wreck if not. MS is a common misdiagnosis so that Lyme's goes untreated for years, at times. It is devistating. MS looks like everything else, clinically. I had a friend that died from Lyme's complications at 50 only because she was misdiagnosed with MS at 25! A real tragedy.

I am not sure about any Lyme's/RSD connection and I am equally not sure that it would matter once RSD is diagnosed since as we all know, the treament issue for RSD is severly lacking. If Lyme's exists, it can be treated. The same is not as easy for us with RSD. But it can only go one direction, right? It can only get better! Here is to new ideas and RSD treatment patterns for 2009!

Hello,

On a VERY serious note, lyme is not easy to be DX.

If you have the RSD DX with lyme you will go VERY SOUTH. If left untreated. Hugs, Roz

Hmmm...Roz, I guess my point was not that Lyme is the EASIEST thing to diagnose, but relative to RSD, that there are tests (admittingly no test is perfect) to detect it, i.e., ELISA and Western blot, as well as others, to give a reasonable suspicion of it's existence. This is after a high clinical suspicion from the history related by the patient of where they have been and if possible, the benefit of clinically seeing a bull-eye rash that is evident in 3/4 of the cases.

Perhaps a case in point is, name 2 tests that objectively diagnose, without an index of suspicion, RSD. There aren't any. Doesn't mean we all do not have it!

The dilema lies in the timing of whether or not the Lyme patient presents in clinic early at the time of the rash, and the sensitivity of labs if the patient is lucky enough to have a presumptive diagnosis in which to order them! And treatment-wise, most people with Lyme disease respond well to antibiotic therapy and recover fully. Better than an RSD prognosis, to be sure!

I do not disagree at all with you that it is very serious, obviously I lost a very dear friend, or that is much more complicated in an RSD patient. Only that it has potentially greater options for treatment if diagnosed early, as compared to RSD.

Hi Dubious,

Love the name by the way, in fact it's perfect.

In case no one is aware it means giving rise to uncertainly.

My guess is that you are in the medical profession yourself, I can only imagine, what you might have been exposed too.

Much Love, Roz

Hi Folks,

Here I go on my joyous way, the day before I got the RSD DX I had run at least 2 miles.

I got the RSD DX about 7 years ago, from a fall in my kitchen.

I was DX with upper right arm RSD. About 3 years after that I was also miss DX with Nerve & Vascular TOS.

Given no hope but a wheelchair. I used to have to crawl on my hands and knees to get to the restroom.



cont..

Question
 

Could someone please tell me how to read on when a post is cont.????

Thanks so much,
Jeanne

Hi Again,

The lyme was in my system so when I fell I went into RSD. You can get it from a flea bite. An MD suggested Lyme, but I could't believe it at the time. They didn't treat it either.

I ended up having rough Cardio SX was DX with Cellulitis/Staph. I had Endocarditis.

I started feeling stronger and better after the IV's.

Then I went South again, I decided to read up some on Lyme. I knew I had to find a LYME LITERATE MD.

That's what I did.

The pain started reversing itself. Much Love, Roz

Sorry for the second time around
 

I may have posted this under another thread, but it is totally true for this as well. I am an ICU RN at a large university hospital which is currently number 7 or 9 (can't recall this year) in receiving research funds from the US govt (NIH). I asked one of the professor/attending doctors about this and this is what he told me.
"The last disease that has been "cured" in the world essentially was polio. Do you know why there is no research to cure anything? Because there is no money in it. Treatment is ongoing and generates income. Cure ends the billing cycle forever."
This is nauseating, but true. Sorry to say that if you think about it, curing disease is something we never hear about unless it's the people effected "Search For The Cure" t-shirts, etc. Not so much in research.
Lori Lee

Dear Lori Lee,

You have so much intergrity, and very bright as well. I thank you from the bottom of my heart for replying. I hope and pray your life will be blessed abundantly. Much Love, Roz

I hope that you really mean that-I mean, it's depressing and disgusting, but it is what he said and it does bear out that you haven't heard of any cure come out of medical research for years and years. We have more that 200 drugs to treat hypertension. Drugs make money and cause MD visits regularly. The magic wand of cure sends a patient merrily on his way. It's a little sick. You would think that humans would be above this.

However, I am loathe to post such a depressing thing, especially when the board is filled with people who need a little hope and faith that the system will work for them.
I love my job and moarn that I am not nursing currently. I deeply miss my patients in the neuro ICU and feel so useless without all of the running around and frustrations that go with the job. I am just one of those people who couldn't do anything else but be in the ICU. Knowing that medical research feels this way is a black eye to a profession that I am normally fairly proud of.
Lori Lee

Hi Lori Lee,

YES, I 100% meant everyword I said.

I am just a hairdresser, but what they saw is what they got. But this is NOT true in the medical profession.

I have also heard the Neuro. MD's can be like turtles and leave their eggs after any OR procedure.

You are a very lovely kind person. Much Love, Roz xoxo

You are NOT just a hairdresser! If you take pride in your work, don't say it like that! Did you know that dermatologists stop at care accidents and hassle my husband (a paramedic) because "I'm a doctor." God help us all. Maybe he can treat the scars. We should all feel our jobs are worthwhile-right now, I can personally say that I desperately need you!
I only added the part about my job because with the rest of what I wrote, I also wanted to remind people that there are medical people out there who are caring and continue to be caring even after the new diploma wears off.

My patients need me, but sometimes I need my patients. I had one very special patient who came from across the country for resection of a brain tumor in the center of his brain through his nose (we do this where I work). Long story short, he and I became buddies for his stay. However, once he left the ICU I had no clue what happened to him or how he did. One day someone yells down the hall that someone is in the hall and wants to see me. I'm thinking the worst. There he stands with his wife looking healthier than anyone should. He was a bicycling enthusiast before, but was now biking 90 miles a day (hello-never in my life have I biked that long combined!) He gave me a card with a long letter inside. I carry it to work and sometimes read it when I feel that I'm not doing anything special or good enough, or we lose a patient.
Anyway, I needed to add that because I know that everyone on this board could write a book about crappy response from the medical profession. I could too, I just don't admire them based on only their academic accomplishments (graduating) and am free to tell them what only runs through the heads of others. Imagine being responsible for making sure that no doctors break patients while they learn-HELLO. (Any doctor is used to nurses being critical, bitchy, and downright confrontational when it comes to patient care and I'm not there to shore up their self-esteem during their residency. They don't even bat an eye.) They have to prove to me that they're good and they should have to do the same to y'all.
So remember the "I stop at emergency scenes because I'm a doctor"-haven't-touched-a-patient-in-twenty-years specialist and be proud of what you do. You're only "just" a hairdresser if you really do't give a **** about how well you do, and I doubt that's true!
Lori Lee:D

Dear Laura Lee,

I HAVE owned a very successful hair salon, usually had 6 ladies working for me. I did hairdressing for 20 years, I really know CREATIVE thinking!!!

Like I've mentioned before, I had 30 Neurologists DX me with RSD. I was dragged to at least 100 MD's all together.

I used to have pain off the charts, my pain levels are now no more than a 1.

I promised GOD if I got out of pain I would help people.

My MD I see, has a waiting list to get on the waiting list.

Do you know why you have RSD???

Big Hugs, Roz

I wish I could mail you my head and have you do my hair Roz, then send it back. :wink:

Good caring hairdressers, who know how to handle problem hair are hard to find.

:hug: :hug:

Hi Curious,

You know I am trying to be serious on this thread.;) Make sure your hairdresser stands in front of you, and make sure she knows exactly what YOU WANT. She should know 100% now to do it way before any scissors are picked up as well.

But anyway thanks for a
good laugh.

Much Love, Roz

When you do it to the least of these you have done it unto me.

Roz is an angel, and making good on her promise :hug:

Hi Bud,

I want soo badly for you to get out of pain as well. Much Love, Roz

Roz,
I have accepted the theory which seems to be the most obvious. I guess I never really posted "my story" so this may be a novel.

Many moons ago, I was working in the triage area at my local hospital (not the one I work in now.) A woman came in yelling that her brother was "dying in the drive" because his "sugar was low." So, I guess they crammed this huge guy into the back of a king-cab type truck and I ran out to find him looking very crappy. My staff pulled a stretcher to the truck and I, feeling all "ER", attempted to pivot him out of the truck and onto the stretcher myself as there was little room for extra people in the open door. I dislocated my left knee and the guy actually left the ER before me. Did the rehab thing and for many years had absolutely no problem or pain with it. I skiied pretty heavily and always had a physical job. About three years ago, the knee would occasionally dislocate, then pop back in. Yes, this hurt like hell, but in a couple of days back to normal. This frequency increased over the last couple of years until it became a problem (my boss had an issue because I could not forsee when this would happen and one must call off with time to find a replacement or one gets in trouble.) Thus, on 10/15/08, I underwent a left knee arthroscopy and patellar realignment. All went well and I was in the preop area talking to the anesthesia groupies (attending and residents). Anesthesiologist asked if I had a preference between blocks or GETA (generalized endotracheal antesthesia or being put on the ventilator.) Honestly THEN I didn't care. Being a nurse, I'm not afraid of intubation, but I did have a little reluctance because I'm a smoker and didn't want ventilator associated pneumonia. Anyway-told the attending that I didn't really have a strong preference so she should use her best judgement as to what works better for the procedure (this is the beginning of the end of my life-shouldn't I see or hear something special????) So, in her infinite wisdom (more on this later) she did a block on me. Now, I know exactly what she did because I've seen attendings walk residents through this more times than you would ever believe. She's talking out loud about anatomical landmarks to find the nerve and miss the femoral artery and vein (big oops with the artery or vein when injecting the drug and it goes right "downtown") So she was attempting to hit either a femoral block or an anterior sciatic block. Anyway, they stab me in the groin and I sit there. Bit of time goes by and I get scared. Only the lateral half of my leg is numb (outside) and I'm afraid that they are going to take me back only half numb, so I get a bit teary. One of the preop nurses goes by and inquires as to why I am upset and I tell her. She sends over the anesthesiologist. The anesthesiologist hears my story and leans over to say "don't worry-I'll take care of it" and proceeds to knock me out with Versed (that medicine that makes you all woozy and forget everything.) Fast forward to a couple of days after my OR. I'm thinking that the severe numb/burning/tingling/patchy feeling is the block wearing off. One day three I call my ortho and demand that something is significantly wrong with my leg-like really. Well, I got this ortho through a referral from a friend that I used to work with, so she was both aware of my background and concerned because her doing this personally was sort of a professional courtesy to my friend. So, me and another doctor friend of mine go in to see her in the office. I had never even heard of RSD and they were all around me youching me and asking me questions, but talking to eachother like I wasn't even there. When doctors do that they are either rude, teaching, or nervous. Well, they say "It can't be RSD-it's too soon" like twenty million times. In my own ignorance, I think they are saying RSV (the initials for a pneumonia mostly in premature babies) and think "of course it's not that-I have othing to worry about." So since I don't have RSV, I wasn't really nervous. Next thing I know I get hit up side the head with some out of this world goofball story that I have to see a specialist, etc. Everyone is panicky but me. Slowly it dawns on me. Fast forward to the PMR appt. He examines me and deems that I have all of the "classic and diagnostic" signs of CRPS (he likes that better) and he has no idea when or if I will work again. In his opinion (and this is one of the few things he has ever uttered) I had my operation with half pain block and full consciousness block. So, I don't remember it, but my sympathetic nervous system freaked out because it took the hit of the surgery. He won't go as far as saying she (*@#&$)'d up, but he does in several round-about ways ie "if there is anyone to be angry with in this, I would start with her." etc. Thus began my RSD to the best of my knowledge. So, to anyone who has had the patience to read this whole diatribe through, PLEASE let me know your take on whether I should kill her or if this was a surgical fluke. It is the question which wakes me from sleep. BTW-I got the name of a certain lawyer and he personally has successfully sued her twice before for the exact same thing. I feel like my health care system loves me.
Miss Roz, this is why I think I got RSD.
Lori Lee

I wish some of the doctors would be as caring and in tuned with there patients as hairdressers are to their clients. I know my dogs vet is more concerned with his animals then my docs with me. On a side not I have other conditions going on with my rsd like many and so am at different specialties and what I found is that none look out of there area. I am always being refered to someone else to be refered to someone else. These docs go through med school to learn everything and I get frustrated cause none will make connections with symptoms if it is not in their area. I don't know if anyone here watches Medical mysteries I rarely do but on occasion. Well there was a lady for ex who had a vitamin issue that went not dx for 10 years and she was in so much pain and had hard time walking and finally a doc looked outside the box and found the answer and with the proper treatment is doing so much better. It is finding that one who will look with different eyes. I often wonder when I bring my records if I should ask them to first tell me what they think and then review the others notes instead of just going with the flow. Sorry this is long. Hang in there all.

Dear Lori Lee,

Before I had RSD I never thought that I would EVER consider suing a medical professional. NOW I feel differently. If you are looking for support in pursuing a case against the person or people responsible for your pain, consider me on your side.

I am so sorry for you. Thanks for sharing your story.

I hope you can find some time this weekend to set aside for yourself. Take a nice hot bath. Sip your favorite beverage (adult or other). Eat some chocolate.

XOXOX Sandy

Dear Daniella,

When I go to MD's, I usually take 3 sheets of paper with me like for instance.

1. Write a bit on your history.
2. Write every SX, even small ones
3. Make a list of questions for the MD, if need be stand by the door.

On number 1 and 2 date them and address them to each Doctor, give them the copy. Their biggest fear is a law suit.

They dot their i's and t's and so did I.

Hang in their, Love Roz