You are correct. I do like this doctor but lately she's had Suzy fill out forms indicating whether she feels better at all and or has "my services as a doctor helped you in anyway". I do feel this doctor is giving up on her. I've told the doc that Suzy's done the best under you, believe it or not, and told her what the positives were and that their is no cure especially a cure for one who received little to no treatment her first 4 years of the disease. In those days she may have slept 2 hours a night for years making her thinking disoriented. Now she does get sleep but her RSD has spread these past 3 years. She is better but her manner with doctors is not the best and never was even when she was a small girl. And she's very shy on top of it all. My wife feels strongly, with everything she's read, that the best thing for her is no evasive proceedures at all and try to rid stress and maximize movement without causing a flare. She wants nothing to do with stimulators, any cutting of bone, skin, nerves etc. She wants nothing to do with physical therepist who do not have a clue. And she's correct, somewhat. She has had ketamine and lidocaine infusions and several of them with no luck. People are different, some will try anything and everything, some just want to be left alone. Suzy just wants to deal with her condition her way and is steadfast about it and it rubs docs the wrong way.

I asked by PT...
 

Hi Jim,

As I said I would ask my PT what this test was all about. He knew what I meant as soon as I said it. What he said is it is a test they use for disability cases, WC, etc. He stressed that they have tests they use that are designed to see if the person is really disabled or not they try and catch the patient doing something they should not be doing or stated they couldn't. He said they get a report of what was stated on the original papers that your wife filled out and go from there. This sounds like a very unfair test. I told him is was for a goverment employer and he said they are the worse. He also stated that not all PT Facilities do it because it is very timely and most don't want to get involved.

I wish you guys all the best with this one.

Gabbycakes

Thanks gabbycakes. Suzy's original report would be several years ago. She wasn't a government employee but a government contractor instead. Either way she can't do much and the stress is a killer for her. I can see what is going to happen even before it begins. I would think a good lawyer with access to 8 years of history with this condition should be able to debunk it. This whole process makes me ill.

I'll also add this doctor has stated my wife has RSD. She has treated my wife's swollen limbs, referred her to major hospitals for infusions etc....on and on and on. It seems this doctor is very disappointed that Suzy has not improved much better than she has. Now, several months ago Suzy did mentioned to the doc she did cut her meds down because of the cost of them at the time (over $1000 a month) in which the doc respond with drug tests. I was not aware of this cutting down but I did notice increased pain with her.

How can a test like this trump everything that was done these past 8 years dealing with a chronic incurable, progressive disease. I'm totally baffled.

If it is the cost of meds that is the reason she is cutting back and no ins - many of the drug companies have programs for discounted or even free meds.

One is called needy meds I believe.
And the manufacturers have programs set up also , so you could contact them directly, if you want to find out more.

found it-
http://www.needymeds.org/

more info on rx help-
http://www.google.com/#hl=en&source=...9d13023017841d

Thanks Jo*mar, we've done just that. Our out of pocket costs with meds have dropped a bunch. In reality our costs are less for her treatment now then when we had BC/BS. I do not have coverage because there is no money to spare. We are now at the wire and if it breaks we will have to sell the house adding more stress to a most stressful situation. If everything turns out ok then we can then spend a little money preparing the house for sale in a better market in my area next spring. I always think ahead and have already contacted a real estate agent just in case.

Yesterday was a great day to end my work week and the beginning of the holiday weekend. Not only did I find out my wife's SSDI hearing may be back on schedule, I talked personnally to my wife's doctor for a half hour yesterday and what a good talk it was! It appears the only reason the doc requested the FCE test was in reaction to the complex form sent to her by my wife's representitive. The doc made a copy of it and it is infact very complex requiring a test of some sort. Her doc's reaction was in order to fill out this form a test needs to be done, not by her but by another PT of our choice. The rep told me all she really needs is a cover letter indicating the progression of her RSD. So, I will talk to the doc and most likely a test will not be necessary at all but a letter instead. It seems all the praying from us, our family and friends and our friends from NeuroTalk are being heard.

I went thru an FCE. After my FCE it was determined that I cannot lift push pull or carry anything more than 10 lbs. It is not a hard test and they said that now with it all hooked up to the computer it is easier to determine if a person is faking everything or not. The test took me about 1 1/2 hrs I think. Don't really remember it was a yr ago almost.

I imagine I will have to go through one of these.

What worries me, is that I can lift up my service dog, who is 42 lbs - but it feels like my muscles are being ripped out. It is not something I do often, but I do put her up on a table to trim her toenails. I help her up - I don't just lift her from the floor. I could probably lift her all the way up if her life depended on it, I could do it once, but I don't think I could do it a second time unless I rested several hours in between.

I carry 12 packs of pop from my car to the house, but have to hold them up close to my body, and I do one, then a couple hours later, I do the second one.

My problem is the PAIN keeps me from doing things. I don't have enough atrophy that I absolutely cannot lift anything - it just hurts so bad, I don't other than in my home PT exercises... then I limit myself to a bag of sugar lifted a few times.

So - my worry is that I have worked hard to keep some strength - but even a gallon of milk causes me a LOT of pain... I could only lift one of those for one or two times, then I usually lay down. In fact, I usually buy milk in half gallons so I don't have to lift a gallon. Laying down does not help the pain - but it keeps my arm from swelling, and any exertion causes me to be very tired.

I am very worried that a test like this will show me to be able to work, when I am not. I have a terrible time doing a few dishes, or doing a couple errands etc.

You hit the nail on the head. My wife's right arm is crippled from RSD. She is right handed. The RSD has spread to her legs and other areas. She knows that if she does not move about her condition will worsen so she does and pays a price. For example, she loves her gardens and was planting today in the heat in which she is not fond of. She rigged a small towl with a small icepack to wrap around her neck to keep the heat down. This pack was very small and not cold but slightly cool. She is now suffering because of this. Not only are her musles and joints sore from simple crouches and bending over but her neck is sore from a towl with 4 icecubes in it. It's not that you can't put one foot infront of another it's the repercussions that come along later that a test like this will never pick up on, jot down and report to one sort of insurance company or another. This test may work for some but to be used in a SSDI hearing, the chance that a gizmo hooked to your appendages spewing data to some knucklehead who then submits to a judge who then dismisses a firm diagnoses and 8 years of recorded suffering for some machine is absolutely too risky to take. Also, this test would be given by someone who has never ever met my wife, knows her condition etc. This test does not see my wife suffer every single day from the least amount of effort like taking a shower.