[skotw]

Hello everyone, as some of you may know i have been dealing with RSD since around march 07,. This is a w/c case and my pm dr. diagnosed me in jan. of this year. since then w/c have only agreed to one stelaganglian block which did not work on me. Also w/c wont agree for a stimulator or a p/c dr. for me. So about 6 weeks ago w/c sent me to a RSD specialist for a second opinion. well he took all of 10 SECONDS!!! to tell me that i didn't have RSD and then put my right arm and wrist through mortal hell and leave me in tears. He said i had crps type 3...which is chronic pain with no know cause.

UPDATE!!!!
My attorney got me an appointment with a great RSD specialist in tampa florida last week. I was very scepticle because i was affraid i would'nt get a fair exam because of what happened with the dr. w/c hired 6 weeks ago. Also i was having to pay 1500.00 out of my own pocket for this latest exam. So i heald my breathe and decided to go for it..I had to because w/c was not doing anything for me and just waiting for our court date to come up in oct. And they would have 1 specialist saying no RSD and 1 p/m dr. saying i had RSD. so it was not looking good for me then.

So i went last week and met the RSD specialist, it was at the RSD/CRPS TREATMENT CENTER & RESEARCH CENTER. As soon as i walked in i felt like i was at home if you can imagine that. Everyone was so nice and understood exactly what i was going thru. They really cared about me and all of the patiants there. The exam lasted over 2 hours, i was made very compfortable and could ask any ?'s to the dr. i wanted too. My sister took me and she got to go back and set with me and dr. the whole time. The dr. read all of my medical records and performed several different tests on me and asked me a ton of ?'s and diagnosed me with RSD type 1. meaning that it was from my work injury and torn ligiments in my wrist. Also he told me that i had'nt been treated for this exept for the one stelaganglion block. and i also found out that the pain in my neck was RSD and the pain in my leg was RSD...This thing has spread!!!!. He also offered to take me on as a patient. In whick i still have a one time change of dr. that i have not used as of yet. I'm am seriously concidering this at this time. After the exam as i walked out of the office i didn't know what to think..its like i was in shock,overwhelmed and thankful all at the same time, like the weight of the world had been lifted of of my shoulders. Now i have 2 dr. diagnosing me with RSD and 1 with crps type 3. I am so happy i decided to go ahead and schedule this appointment. He also wrote down for me a new treatment plan that i should start asap!. I have gone WAY to long without any treatment...over 2 yrs. now since my intial injury.

Anyway thanks for listening and thanks to everyone for there encouragment. You all have helped me even tho i havnt been on this board very long..i feel at home here!!

god bless you all!...skot

[reruho]

Skotw,
This is wonderful news and I know how relieved you must feel now. It is like, FINALLY, SOMEONE BELIEVES ME!!!!!" You have gone a long time without treatment if your injury was in March 07.

Your other doctor is telling you that you have CRPS type 3? I have never heard of a type 3.

This is from RSDSA's website (Reflex Sympathic Dytrophy Syndrome Association).
CRPS Type I (also referred to as RSD) - cases in which the nerve injury cannot be immediately identified.
CRPS Type II (also referred to as Causalgia) - cases in which a distinct "major" nerve injury has occurred.

So I guess you can say all your doctors are saying you have RSD/ CRPS.
Reta

[Bussey]

Hello skotw,

There's an adage that says," It takes one to know one ". I understand exactly how you feel! I remember the struggle to find out what in the world was wrong with me, back in 2003 and 2004. As I continued to suffer from symptom after symptom after symptom, literally, and have Dr. after Dr. not know what was wrong with me, was one of the absolute worst times in my life! I knew something was wrong with me, and others could see the changes in me, both physically and emotionally. There is just something about knowing that something is wrong with you, but not knowing what that something is, that can come pretty close to driving you crazy! Then, to have doctors tell you that there was nothing wrong, or there was nothing there?

Others have to go through this experience, to understand the relief, as well as the weight that is lifted off of your shoulders, once it is found out, that you are actually suffering from something. Then, to finally have someone give you the correct diagnosis, is absolutely overwhelming! Of course, no one in their right mind, wants to be diagnosed with anything! However, when you know that something is wrong, and there is no way that you can deny the obvious, I think it is pretty normal to want to know what that something is! When I was finally diagnosed in 2004, even though I had no idea what it meant to suffer from RSD, or how this condition would turn my life upside down, and inside out, just finally having a diagnoses, literally felt like a huge weight had been lifted!

I don't want to say congratulations, but I am glad that the weight of the world has been lifted off of your shoulders! Also, I am very happy that you are going to be receiving the treatment that you should have been receiving, a long time ago!

I'm hoping that the treatments that you receive, will help to relieve your pain, as well as, to abate the other symptoms of RSD, that we suffer from. I suffer from RSD type 1, and I know many others who suffer from RSD type 2. However, I have never heard of RSD type 3.

I wish you the very best, and may God Bless You!

Bussey

[skotw]

hi all, thx for both of you. i too have never heard of crps type 3. but you have to remember that it was a w/c dr. that diagnosed me with that. he said it was type 3. basically he said i had chronic pain with no known cause of pain. and w/c hung there hat on that, hoping that i would believe it also. but my attorney set me up with this new dr. that truly diagnosed me correctly!!! god bless you all!!! thx!

[reruho]

Skotw,
The reference to a CRPS type 3 made me curious. I think I found out what he is referring to. At the present time there is the concept of Stages which has to do with the progression of RSD/CRP. Some doctors accept this concept and some say it is outdated. You doctor may be referring to the new concept of there being variations in the way this disease progresses.
Reta


"…There are three variants of CRPS, previously thought of as stages. It is now believed that patients with CRPS do not progress through these stages sequentially and/or that these stages are not time limited. Instead, patients are likely to have one of the three following types of disease progression:

Type one is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur.

Type two is characterized by more intense pain. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.

Type three is characterized by irreversible changes in the skin and bones, while the pain becomes unyielding and may involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening is more dispersed…."

http://www.crpsadvisory.com/crpsa_about_rsdcrps.html

[skotw]

hi reta, thx for your post!...i have read over it several times and it took me back in my mind to the dr. visit i had with the the dr. who diagnosed me with crps type3. I dont think he was refering the 3 variants of crps that you speak of in your post. His exact words to me where....."You have crps type 3 in which you have chronic pain with no known cause". He then said "Sometimes people hurt for no reason" and he walked out of the office and was done with me! after about 15 minutes. If he would have explained to me about the 3 variants of crps and how they refer to me and my diagnoses i would'nt have felt so lost and confused with his diagnoses. I believe that dr. visit was the worst experience i've ever had at a dr's office before. I was made to feel like a car on a production line,get me out as soon as he could!!

Reta please dont take this as if i dont appreciate you and the info you have provided for me and other's on this board. You are just an example of many on here helping us gain nowledge of this disease/disorder. I guess my point is that its a case of you should have been there to see and know what and how the dr. presented himself to me and what he didnt say as apposed to what he did say.

It's like he was a hired gun for w/c to present to the judge at court!

god bless u all! skot

[reruho]

Skot,
I can only imagine how bad it was, something like a bad dream that would not end. I often wonder if they realize how pain and suffering they cause with these short statements with no explanations. He needed to sit with you and explain what this meant to you. And, he needed to tell you what he could and could not do for you and what your options were. These are the kind of doctors that drive people to suicide.

This reminds me of a movie with William Hurt as a doctor that gets sick (cancer) and he has to become a patient. He gets dose of his style of bedside manner and he doesn't like it. He gets a different perspective of medicine from being a cancer patient. The movie ends with him taking a new approach (humanistic)to how he trains the young doctors to treat patients. He puts them through some of the tests and indignities that patients are told to live with.

I hope you get a good night's sleep and low pain day tomorrow.

Reta

[Truth Seeker]

Hi skotw,

Put CRPS out of your mind, it does not mean a thing, it merely makes things easier for the doctors.
C stands for Complex, meaning it is over their heads.
R stands for Regional, yet nothing is regional about it.
P stands for Pain, which is an understatement.
S stands for Syndrome, which is a medical combination of signs and symptoms that indicate a particular disease.

As it relates to doctors, I know exactly where you are coming from.
Most of my stress came from doctors.

Truth Seeker