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Old 04-08-2005, 08:19 PM   #2
tkgoodspirit tkgoodspirit is offline
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Join Date: Jan 2004
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Re: If anyone needs help, I am here.

Hi.

I was dx'd with FM in 2002 and recently was told by a rheumy and my GP that I have CFS. I am wanting to have intense blood work done, like the Epstien Barr, CMV and the other's you mention. But the only test I could get out of the rheumy was for Hepetitis! I think that there is something underlying, that is causing me to be sick. I know what FM feels like, but for the past six or so months I have been sick. Fever off and on, I usually run low, muscle pain (not like the FM pain), joint pain, swollen and painful glands in my neck but especially my underarms. I am so weak. I can barely lift a gallon jug of milk. I try and exercise, but then I feel sick. I feel totally different than I did when I just had the FM. I also have some pretty severe back issues going on, and hopefully will have surgery this year. I also have bursistis in my right hip pretty bad. But for the past few months, I simply canNOT get out of the house. I have canceled so many dentist appts. I need 3 crowns cuz my teeth are cracked from clenching, but I have MVP and need all those anitibiotics so I don't think it's a good idea to be poking around my mouth when I'm running a fever. Oh and I have pain when I pee and it smells very strong. It's clear, I drink a lot of water.

So I want to know HOW I get these tests run? I would pay for them myself if someone would just tell me how to get them done! I've left messages for my Rheumy, she doesn't really like me, I insisited she have Chostochondritis added to my records so I could put it in my SSD file and she got mad at me, and ever since, she won't return my calls. I looked on the NET and there is a place in TX that will send you a test, 3 viles, and it has instrucitons on what is needed, and you get the blood drawn and overnight it to them and they will run all those intense immune system tests that can go along with CFS and CFIDS. They too, believe that CFS is caused by something that is underlying in your system. But I can't get anyone to order the tests for me! It's my body, and why should any doctor care what tests I want done, is how I feel. It won't hurt, and if all comes back negative, well fine, but why can't I just check? I called my rheumies office again today, and won't get a call supposedly until Monday, but if I don't hear from her, I'll call my GP. And if HE won't order the tests, I guess I'll ask my Pain Management doc, which makes no sense, but I think he just may refer me to a lab for blood tests if I ask him too, but maybe not. All I have left to ask if my phsycotherapist! She's just a clinician, who would have to set me up with the Psyc doc, and I don't know why HE would order blood tests for me! But hey, I'll try any doc!

So, can you tell me how to get my doc to run these tests?

I appreciate any advice, I am so SICK of feeling this way, and wondering if there is something that may be going on that can be treated! I know it won't cure me, but at least I would know what caused all this. I'm about ready to stick myself and pull my own blood! LOL

Thanks for any help.


tk