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TJ903

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About TJ903

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    Silver Member

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  • Location
    Merritt Island, Florida

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  1. Sorry to hear about your situation, but you have come to the right place. Not only will you find a wealth of valuable information, but you will get a wealth of love and support. We know or have been where you are now and those of us who were we you are now will tell you, not to overload on researching. You will tend to fixate on the bad and the stress will not be good for you. Find a Rhuematologist that you are comfortable with and one that will listen to you and address your concerns. You will need to be an informed patient as well. Gather your support team around you and take charge.
  2. Congratulations!!!! There is hope for us and you are our shining example. Many thanks for your help and inspiration for me personally. My strongest hopes and dreams for you and your family- TJ
  3. I've just been diagnosed with polymyositis (PM) and have systemic sclero. It is great to see all of this information, esp. the problems with speaking. I go the the physical therapist (PT) this week for evaluation and hope she is knowledgeable. Sorry to hear that you are suffering with both, it makes it doubly hard to get a work out that isn't too hard on the heart (I have problems there as well.) Will follow this post; great inforomation to take to my doctor.
  4. I'm in as well, might be just the thing I need to boost my emotional meltdown--
  5. Many thanks to everyone---and just as I thought it is not a dream. To make matters worse my night was spent trying to calm the cramps in both of my legs- sometimes I wish that it would all come at once so that we would know-okay this is it- this is what I have to work on. Start that -to-do-list. Check 'em off one at a time, what a party we could have, A mini celebration for every bit of food consumed without pain, or gagging, every joint that freely bagan to operate, every dentist office where they say 'looks so good we don't even need to clean!' every bodily function that actually sta
  6. So sorry to hear all of this. I too have alternating cold and stream sweating. I have to change my clothes, sheets and my hubby's. Just joking here, but he's made comments about the amount of sweat. On the other side, when you get a chill and you have extensive skin issues, does it feel like needles are being stuck in you but from the inside out? I having blood work to confirm a diagnosis of polymyositis. Oh, just what I needed. That will probably explain that issue. My skin is so hard and looks like and feels like orange skins. I'm losing hope. The more rigid my body becomes, the
  7. Sorry to hear about so many of us with migraines. Is it brain fog, pill effect or sclero? We may never know. I am so surprised to hear others have the 'shock' syndrome. I've had it for about five years, if this is sclero related it may be one of those mis-interpreted symptoms. I was diagnosed 01-04-07, maybe it should be 01-04-02?mmmmmmmm. Gives us pause to think. We don't need any more issues than we already have. I hope that everyone can find relief for those migraines - mine are doosies, but can't seem to pin-point the cause. I'm lucky in the fact that they don't last longer tha
  8. Back from Johns Hopkins, with more information, some good some not so good. I am not eligible for SCT because I've had cancer twice in the last eight years and they are adamant about me not receiving the stem cells because the chances are very good that my cancer will come back with a vengence. But, there are other treatments like IViG that I can get. I was a bit upset, but then again there is another option. So all is not lost. Thanks for the info. on IVig. I feel much better about receiving it. Will have to fight for it I am sure, and now after fightin my insurance company for 18
  9. My skin is so tight that they cannot get a needle in- thank goodness for the port. However this is my second port, the first one became useless after the sclero warped it's position and it got infected. Seems my new one is headed for the same outcome. On my last flush, the could just barely get a blood return and after the labs were done, my skin had closed around the needle making it hard to withdraw. The nurse was beside herself. Any new ideas or options out there that I can draw upon? Sorry for the numerous postings- I have an appointment at Johns Hopkins on Tuesday and want to get
  10. IVig keeps popping up- I can't really understand what it is or how it works. Has anyone had treatments? Does it help, and what is it exactly? Many thanks again for letting me pick your brain-pans! -TJ
  11. Thank you everyone! To those who think they have nothing to contribute- please write. As I mentioned to one of the other forum participants who has offered to help, I feel like a female version of Don Quixoti! There is just me fighting this and trying to string even a sentence together is hard on my brain. I've cut down on my pain meds a bit until I can get through this. A clear head is needed. Unfortunately for me Health First Health Care is a self-funded insurance and as such is protected by a state agency called the Agency for Health Care Administration which protects these self-fu
  12. Thanks for the quick replies, my hearing is next month on the 11th so I have more time to prepare. Many thanks again and any advice is welcomed. tj903
  13. Can any of you let me know what insurance companies have covered stem cell transplantation? I'm on my final appeal at the state level here in Florida and need to present them with names of other well-known health providers. So far - I have United HealthCare, Blue Cross Blue Shield, and Humana. I was diagnosed 01/04/07 with Systemic Sclerosis, Diffuse Scleroderma - what is the generally accepted name? Included with the sclero, there is the hearburn (GERD), interstitial lung disease (ILD), congestive heart failure (CHF), severe skin involvement and a host of other ailments yet to be n
  14. Thanks for the quick response, the fact that you are familiar with the pain from TMJ makes me feel better, sorry that you have itm, but you can understand what I am going through. I had a couple of splints made, had a GELB appliance, and blateral arthroscopic procedures done. My mouth is so small that the child size mold will not fit in my mouth and I have boney growth on the roof of my mouth and behind my teeth on the bottom so making splints are difficult. My dentist has informed me that the orthodontist has truly wrecked my bite and he doesn't know what to do. But by all means, pleas
  15. Does anyone know of a good dentist in Florida? My oral surgeon dropped my when he found that I had sclero. There are days when the TMJ pain far outweighs the sclero pain, if you can imagine it. My mouth obviously will not permit a lot of activity to go on, and I'll probably have to hit the gas for my annual cleaning. Any information will help. I did find toothpaste and mouth rinse that do wonders for the dryness. Of course, nothing lasts forever, but every little bit helps. Thank you for you insights, as always- they are precious little diamonds of hope!!!!
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