how is connective tissue disease diagnosed?

[crystaly]

As a matter of interest. I know a few people have taken years to get a diagnosis  on the forum. Could they please tell me  what tests determined they had mixed /or connective tissue disease. Was it blood tests, biopsies, etc. ? I,m looking at all options at the moment.  Thanks Chris

[itsgottagetbetter]

Hi there I am 27 and I have been diagnosed with MCTD. I have had symptoms for many years before being diagnosed and I am not even sure if its right. It must be because I have been to several rheumatologist and its been confirmed. I think its been very hard to except it not because I am afraid, but because no one knows how its caused,why it comes and how to treat it. Even the name sounds shadey:) If anyone is out there that has been diagnosed with this and has found some relief please let me know. I have been on many different therapies eg: methotrexate,methotrexate injections, imuran, arava, cell cept and now they will try the cyclosporines. My pain mgmt md wants to do the spinal blocks, but I'm not sure if those will work for this kind of pain. PLEASE let me know if you have any answers,websites,chatroom,clinical trials ANYTHING!! I am getting pretty desperate for relief and answers. ***@****

[myproblem]

http://www.uklupus.co.uk/ssyn.html
I was reading the list at this link, and got an idea for you. Why don't you go for an eye exam, and try to get them to do these tests. I bet you don't need a referral for an optometrist. If you can see an opthamologist, that would be even better.

[crystaly]

I know I wish they were as well. I think I,m going to have to start saving to try and get tests done privately if I have no luck getting them done. Thanks for all the support anyway it is appreciated. Take care Chris

[myproblem]

I just looked down at your 5/11 post, and saw that someone else had suggested Sjogren's. If only your Dr. were as helpful and openminded as this forum.

[myproblem]

Prednisone if anything tends to keep people awake a bit at night. Most people have few side efects from the short term use. I do feel a little dumber when I take it, but I don't know if this is an official side effect.

[crystaly]

No she hasn,t tried giving me that. My pain levels have increased dramatically hence the tramadol dosage 1000mg a day plus 30mg amitrypaline. My Drs just seem stuck on its neurological so any new symptoms get labelled as being part of that. I will ask her though. Does predensol make you sleepy ? I find it difficult to organize my thoughts at time because of my present meds and I,m always tired. Chris

[crystaly]

Thanks . You arn,t in way dumb when on the forum. Believe me. In fact I rate you and quite a few others as really knowledgable. I down loaded that article on sjorgens and Im going to fax it to my neuro just so she can look at it before my appointment in July. Might have a bit of luck doing it that way. Thats if she reads it. In the mean time I will speak to my Gp re predilsone but dont think I,ll have much luck with that. Take Care Anyway. Chris

[myproblem]

Has your Dr. ever given you a trial of Prednisone? That was one of the things my Dr. did to nail down that it was autoimune. I had a 2 week pack with a tapering dose. It is VERY cheap, probably less than $20 US. Anyway, I did not realize just how much pain I had been living with until I did that trial. Within a few days of stopping it, I could really feel it. If you can get your Dr to give you the Prednisone like that, it may prompt her to do some autoimmune testing based on your experience with it. Good luck.

[crystaly]

Thanks yet again. I can imagine how difficult it must have been for you starting in your 20s. I think the hyperchondriac labels thrown about much too easily. I,ve been told I,m something of a mystery too so  perhaps the road to my diagnosis is long (if I ever get one ).  I think one of the problems we face in the state health service here (NHS) is thats its underfunded and there always looking for cutbacks. It can be quite difficult to get any tests done at all, let alone new ones.
I think your DR is similar to my neurologist in admitting they dont always know whats going on. Not many out there who would admitt to that is there. Its nice to know Your an enigma as well as me . Take Care Chris

[myproblem]

I never had any biopsies, but if you have any type of sores, or skin rashes, they can be biopsied to detect things like discoid lupus. I have had a mile long list of blood tests, many of which I posted to you. In my case, none of them fell well enough within range of a specific disease to make the diagnosis easy. The Dr. I have now is very kind and thorough (unlike some I've had in the past), and he does a full workup on me every year to see how my disease is progressing. As good as he is, I still have him stumped. He has told me (kindly of course) "You're hard.", and "You're an enigma.", as well as telling me "I just don't know." Now that's a hard one for a Dr. to admit. Anyhow, we kind of mutually settled on MCTD (Mixed Connective Tissue Disease). I sort of overlap Lupus and Scleroderma, but I think I have more of the Lupus stuff. I'm really surprised that your Dr. wouldn't do any tests for you. Then again, I had Dr.'s like that for years. The Dr. I see now is an Internal Medicine Specialist. The only time I went to a Rheumatologist, she thought I was a hypochondriac, and told me I must have early Osteoarthritis (you know "old people" arthritis). Yeah Right! I was 25! I never went back. Anyway, don't give up. There are reasonable treatments for almost all of these diseases. Just keep pushing it.