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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

That caught your attention didn't it! I promise this is my last post tonight. Im crashing and burning fast.

Anyway, I just wanted to share my diagnoses experience with you guys, because like you, im sure, i've seen a million doctors and have been moved along like a booger being flicked out a window. If they (the doctors) are stumped, then typically I find they are ready for the next patient.

Im a 36 yr old mom of three. I have a 19 yr old daughter, who, God bless her heart, thinks that we should pay her for shareing her oxygen... I'm hoping someday she will grow out of this stage, but I love her dearly, just the same. She moved out last year, which leaves me with my two boys.

My 15 yr old son is a great kid who I LOVE spending time with, joking around with and laughing with. He's on the HS surf team, and most of our 'quality' time is in the car at 5:30AM, as surf class starts on the beach and in the water at 6am.. and common', does he really think he needs me for more then driving him around??? I love watching his change from a little boy to a little man. Seemed to happen overnight. What a joy!

My 12 yr old son is destined to play pro baseball some day and is even playing in the Pony League world series in Cooperstown NY at the end of July. I wont be flying to NY with him, but I'll watch him on TV and be screaming "thats my son!" from sunny California. He's got a heart of Gold and loves to share his love letters with me and ask me what I think... He's so darn handsome! :)

Im a lesbian, and have been in a legal, domestic partner relationship for almost 9 years now, with a wonderful human being, who is a local police officer.

The group of us together make a wonderful family.

My family has gotten used me being sick all of the time with one thing or another over the years. They are used to my Dr.s appointments, and my aches and pains. They dont even give it a second thought anymore. The biggest scare they had was when they found pre-cancerous melenoma all over me, but we seem to have that completely under control now.

I can think back to years ago, when my shin, ankle and foot would swell up and the kids would take turns pushing in on it and screaming 'GROSS!" as it would just stay there. Shelby, my girlfriend, would beg me to go to the doctors, and we would argue, with me telling her, "by the time they get me in for an appointment in two weeks, it will be gone". I've gone to the emergency room for it before, because a nurse on the phone suspected a blood clot. They did ultra sounds and blood work, but it all came back negative for deep vein thrombosis and blood clots, so they just told me to elevate it and ice it and see my doctor. (pass the patient is what I called it). My doctor would send me to an orthepedic doctor who would say "Huh? it did what? hmmm.. I dont see anything".. and leave it at that. It got so frusterating, that I finally stopped going and just accepted the fact that I had this gross condition that caused Pitting edema in my shins, ankles and feet.

Well, recently, like two months ago, I woke up and my left hand was so swollen, i was tempted to slice it open to relieve the pressure. Especially on my ring finger. I thought perhaps I had been bitten by a bug or something and wrote it off to that. To this day, the swelling hasn't gone down completely. I cant wear my ring anymore at all, and seriously, cant even get it past the first knuckle.

Last week, I thought I had re-injured my left knee by sitting wrong or something. I was at my computer working and I had my leg tucked under me. after I straightened it out, it was a bit stiff. The next day, behind my knee cap hurt really bad, like I had a knife going through it, and I could hardly put any weight on it at all. All I could think of was that I blew my leg out again by sitting!!??!! How pathetic was THAT... and typical for me. Throughout that and the next day, the pain worsened and intensified in my knee.

The following morning I woke up and the arch of my foot and my hip joint hurt on the same leg. Not only that, but I could feel, along the back of my upper leg, pain that felt like searing and burning running up and down the nerves. To touch the skin felt like you were trying to run an extremely hot iron on me. The muscles hurt, the skin hurt, the bone hurt, but my knee did not hurt so localized anymore.. it was like the pain exploded and spread... I was no longer limping becasue of my knee.. i was limping because my entire leg hurt, deeply.

I was blessed to have a routine visit to the GP the next day, and to top it off, my hand was still swollen. I told her "I really have something I want to talk about. Its bothering me severly. I get this random pain, and I can feel it comeing on. Sometimes, I have no clue its coming on. It usually is indicative that my period is going to start in a week or two. What happens is, the nerve starts to burn, and the burning spreads. The skin is extremely sensitive along the nerves inside and outside. I get random swelling, usually in my shins, but this time its different.. its my entire leg. Not only that, but my hands have become involved. Im tired of being told its nothing and i'm afraid its serious. Please listen to my symptoms. Please HEAR my words. Im Scared something is really wrong, and its only getting worse."

She listened to me, and told me that she agreed, that it could be something serious. She told me that she was thinking Lupus, or M.S., but didn't want me jumping to conclusions, and she asked me to go see a Neurologist that she really thought was the best one shes ever known. His name was Doctor Le.. (pronounced Lay).

I called his office and he got me in the next day.

From the onset, I took a liking to this doctor. On the form there was no place to check off Domestic partner, only "married, divorced, single, widowed".. he noticed that, and excused himself from the room. He came back and told me "that will never happen again to any other patient, and I appologize that happened to you".. he changed the form.

We went through my symptoms from the get go, going back years and years. He listened, he interjected, but NEVER interupted. He never looked at his watch, he never wrote while I talked, only after I was done talking, and he told me what he was writing. He didn't rush ONE second of our appointment. He was compassionate, and understanding. When he would touch me, he would tell me that if I wanted him to stop at any time, it was okay. He told me that there was no way he could possibly comprehend the amount of pain I must be in. He loved his job, and he loves his patients. He then diagnosed me, telling me that he has even done extra studies in RSD and the treatment for it.

His protocal was the Topomax for one month, then another anti sezure drug for a month and then another for antoher month, so that I could decide which side effects I thought were the most tollerable. He told me that after that, we would work on finding the most tollerable depression med as well. He also gave me my choice of pain meds, and told me to NEVER be ashamed, or afraid to ask for more. He would always always give them, no questions ask. He said that most of the medical professionals dont comprehend this disease and the effects of it regarding pain.

He then described what seemed to be a cure for RSD and the only one so far, they are performing in Germany. He told me if it got that bad, he would gladly put me in touch with the doctor there that would help me, and explained WHY this is a cure, vs. a treatment.

The clincher and what I found most amazing was, he walked me to the door, asked the receptionist to please make copies of his notes and said "you've been told some pretty crushing news today, and you probably wont remember it all. I wrote slow and neat, so you can read it and share it with shelby. I hope it will help her to undertand further what we talked about today. Sometimes its as hard for your spouse to hear and understand as it is for you. EVERYTHING in my notes you will get a copy of, for your file at home. If, while your explaining it, you have questions, or she has questions, please feel free to email me. I check my email about 4 or 5 times a day, and I will definatly respond to all of them. Never feel like your imposing, email me all you'd like too..." He hugged me and said, "i'll see you in four weeks".. and he smiled at his next patient that was waiting.

There was a lot more said and done in the 2 and 1/2 hours he spent with me, like calling in his collegue for a second oppinion etc. My point is that I've never, in my life, run across someone so compassionate in the medical field EVER.

I hope you all are as blessed as I am to have a doctor like mine.

I know I've told a long story, and I wont do it again, but now you know my story... im sticken' to it!

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