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RE: New Results! - Bad Boy Bad Boy - 05-14-2010

What do you tell him? You don't tell them anything. You ask them...

You ask them if you could be properly tested to prove you have CRPS/RSD. Or to find out if you have something else as treatment for RSD may not be working, for you had said it wasn't in the past.

(((Demineralization was noted on radiographs and diffuse hyperactivity on bone scans starting at the early vascular phase. These findings suggestive of RSDS led to treatment with calcitonin, griseofulvin, and pamidronate, all of which were ineffective. Then afterwards Laboratory tests showed severe inflammation, promoting investigations for other conditions)))

The medical report stating Demineralization, can mean RSD/CRPS, and yet it can also mean you have something other then RSD/CRPS.

All we are doing is repeating everything over and over again, yet nothing is sinking in....

RE: New Results! - Sunshine7 - 05-14-2010

When I say I tell them I actually mean ask, I guess I just put it like that because I'm so darn upset right now!
I have always been nice and out going, but this is my family they are dealing with and we will not give up, and yes when I go to the PMD I will ask for more test to be done to prove I have CRPS/RSD, you bet!
If the PMD gives me a block treatment and it works is that one way to prove I have CRPS/RSD ? What are other ways so I can talk to the PMD about for options to do or say?

Thanks again!

RE: New Results! - Bad Boy Bad Boy - 05-14-2010

Sunshine, medications can alter many conditions. Example even if not CRPS/RSD the Block can make you feel better. It doesn't mean you have CRPS/RSD though. Only proper testing and lab test can prove what you do have. But, please any pain relief is also a must for you, or any human.

(((Demineralization was noted on radiographs and diffuse hyperactivity on bone scans starting at the early vascular phase. These findings suggestive of RSDS led to treatment with calcitonin, griseofulvin, and pamidronate, all of which were ineffective. Then afterwards Laboratory tests showed severe inflammation, promoting investigations for other conditions)))

It's in your medical reports stating Demineralization. This above was a medical refference I supplied for you. Showing you why any person such as even the IC can question CRPS/RSD. Unless you can get the PMD to prove it is, your going to have to fight long and hard with your attorney.

When interpreting a biopsy, or an imaging study (xray, CT, ultrasound, or MRI, among others), sometimes a particular finding can mean different things in different clinical situations.

When a lab technician or radiologist comes across a finding which may mean multiple things, they say "please correlate with clinical findings" or "clinical correlation requested" or "clinical correlation essential" to indicate that the finding may mean several things, in different circumstances.

Might I say, you could ask the other CRPS/RSD people here, on how they proved their case of having it. That might work out better for you also. And help with different information on combating the legal issue of CRPS/RSD.

RE: New Results! - Sunshine7 - 05-14-2010

Thank you Bad Boy i will take ur suggestion and ask them, thanks again.

RE: New Results! - Bad Boy Bad Boy - 05-14-2010

Sunshine, I'm not being mean to you, nor judging you. It is hard to explain all this when your upset with work comp. As I am very sure your mind is going 240 with it all.

Now, I don't have all the information you would need to battle the CRPS/RSD issue to prove your case. I wish I did, for you would have it. It is just a very tough case to prove, very hard in fact. And that's why say somehow, somewhere you need to get a medical report, (not a medical opinion) showing testing has proven CRPS/RSD. For we don't want to see you go anymore backwards within your case, we want to see your case go forward.

RE: New Results! - Sunshine7 - 05-14-2010

I also pray for that Bad Boy, but I'm not a doctor nor an attrney so all I can do is stand up for myself since they will not, I feel they are being paid off, my employers corporation is pretty big and powerful!
That said so are there attrney's.

Thanks agai Bad Boy!

RE: New Results! - chrischris - 05-14-2010

Sunshine, the key point in this article I am attaching is that there is no one test to prove RSD. First dx is usually clinical and determined by your symptoms. Other tests may be done, but can show false when you do have RSD.

For me, it was thought after carpal tunnel surgery by surgeon that by my symptoms I "might" have RSD. This ortho doc didn't want to dx so he sent me for some testing and to a neurologist. Nuerologist dx'd based on symptoms only. Eventually I did have 3-phase bone scan which was interpreted differently by 3 different doctors. Eventually I was sent to QME for dx. and was given a very thorough exam, and he wrote that I had 8 out of 11 symptoms on that particular day. QME said I was not MMI, but TTD. That's when I/C was asked for PM, but was denied 3 times before receiving PM. By then, Stellate Ganglion Blocks were not a good treatment. SGB's are good if RSD is caught early. However, they did prove RSD which was just a another confirmation. I had a series of 3. RSD did spread to my ankle/leg after an achilles tendon rupture and I had blocks very soon this time; and after 3 blocks, my leg/foot have very little pain, and only occassional flare ups as long as I keep exercised and pro-active in my recovery.

I am getting a trial SCS next week, which has proven to be very effective in controlling RSD pain. I am very much looking forward to this as I am not able to take pain meds due to kidneys. The only pain meds I can take are for the depression which are Cymbalta and Klonopin. Yes, RSD causes Depression; not the other way around. RSD causes changes in our lympic system (brain chemical changes). Anyone with RSD should see a psychologist for an evaluation and counseling.

Now since I have been officially dx'd, and confirmed over and over, I don't get any grief from doctors about my condition. Anyone who has RSD or treats RSD knows that it varies in symptoms from day to day. I always sweat when I do anything physical, like grocery shopping, but I do it anyway and just take the stares.

I keep a good attitude and getting the depression under control has helped me cope with the pain. I remain as active as I possibly can, but do suffer fatigue often. Rest when you need to.

I hope this helps some.

RE: New Results! - Sunshine7 - 05-14-2010

Thank you for your replies, thank you ChrisChris for putting that site on there,
I do have all those symptoms as follows:
1. Spasms
2. insomnia
3. Burning pain, sharp stabbing, like a car battery negative and positive wires constantly touching each other, sharp and burning pain that radiates up to my lower back and sometimes to all of my right side.
4. As you can tell I get very adjetated.
5. My right foot and leg turn red, the lightest wind or bump hurts and gets me upset right away, any temp of water hitting or touching makes me cry, someone bearly touching my foot or leg brings me to tears and makes my foot and leg jump.
6. I have severe anxiety the PMD & PSYCHOLOGEST BOTH AGREE.

I'm on Gababentin 300MG to start off with the PMD wanted to put me on 600MG I told him of my experiance I had before and he respected my request, but when I go back to see him I'm gonna ask him for the 600 because the 300 seem not to be working that well anymore, also I put Baclofen Cream 60GM, 3 times daily so it helps prevent bad spasms in my leg, even though I still have them just not as bad.
I also take: Trazodone 50MG for my insomnia.
I also take Generic Paxil 10MG Tab 2 times daily for severe anxiety and severe depression, I beleive my psycoligest wants to see me on monday to up my Paxil, To tell you the truth I am looking forward to seeing him so I can let some things out of me, finally! Thanks again!

RE: New Results! - Bad Boy Bad Boy - 05-14-2010

Sunshine, if the Baclofen cream isn't working well enough, you can ask for the pill form. I had taken the pill form after my Knee Replacement. It helped great. As I too was having spasms in the leg, and Restless leg Syndrome Or RLS. At first I took 2 per day, then I was able to get by with 1 a couple of hours before I went to bed. It always worked well for me.

As you may know I had cervical spine injuries. I was told by 2 doctor's I was getting a Neurological overflow so to speak when the knee got replaced. And Baclofen did work...

RE: New Results! - chrischris - 05-14-2010

I can't dx you, but you do have the symptoms! I'm so sorry, but if you do take my advice, it will make it easier. Seek counseling, and take depression meds. If one doesn't work, try another. Everyone is different. You will not only feel better emotionally and somewhat physically, but your family and friends won't be tip toeing around you so much. LOL! Look for something positive every day, and get out of bed even when you don't feel like it. Keep busy and do lots of lots of home therapy. Rest often, for short periods of time and pace yourself. Be very honest at your doctor appts. If you feel good that day, tell him/her.

The neurologist who dx'd me didn't believe in PM docs, blocks, or meds. He put me on effexor but said it was to help me sleep. He also gave me some sort of triclycide med. By this time I already had other treating docs who were giving me conflicting advice on treatment when they found out I had RSD. This doc, long story made short, dropped me because of too many other docs on my case and I was too complex for him. Adios! I was actually crushed as this was the 2nd time in my WC injury that a doc dropped me. I even asked him to reconsider because I respected him. My first PTP dropped me after I told her I wanted a second opinion by a "real" doctor. LOL!

Now I have a wonderful doctor who is in an occupational medical center. Yes, he only treats WC and sometimes we don't see eye to eye, but he is real and we can talk. He put me on 1800 mg. of neurontin. His partner said I could up it to 2700 if I needed. Eventually I was switched to Lyrica, 450 mg. per day, and I loved it, but it didn't love me.

I have found all my docs thru the MPN list which my employer has posted online. I have asked my attorney for opinions on certain docs but not to choose one for me. He did have a say in my AME's. I have been to two of them now; one for Psyche and one for Spine; and both were on my side.

Now I'm hoping the SCS helps. I have been made MMI with lifetime medical award, and my case is still open. For the life of me, I can't understand why everything takes so long. I'm so ready to at least take a step out of the WC arena. LOL! Just gotta play the game and roll with the punches. Tongue Tongue

P.S. I do use Lidoderm patches for pain, and a Tens Unit, but the water therapy has been the best; at least in my case.