MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Hello, I need advise from anyone who has a seronegative diagnosis.
I have been suffering for 7 years with joint pain, muscle inflammation, rashes, dizziness, numbness/tingling, fevers, etc... My blood work will sometimes show a low positive ANA when I am in a full flare but for the most part my blood work is always normal.
I was put on prednisone for one month 5 years ago for a case of uveitis and it was the only time in 7 years that I was almost completely pain free. I felt great and it was so refreshing but after being off prednisone for about a month everything slowly started to creep back in again.
I have so much inflammation in my body that my doctor finds it surprising to see my SED rate come back normal. You can feel the inflammation in the areas which hurt like my hands and feet yet tests are always normal.
This year I have been in one of the worst episodes I have ever had. It started in January and it just seems to be progressing. I always have mild pain and mild neuropathy but this has been debilitating and exhausting. I am so tired all the time, my joints in my hand are swollen/red/painful, I keep having fevers especially on days where my joints seem to be flaring the most.
I just need a diagnosis to start proper medication but all my doctor seems to want to give me right now is an anti inflammatory (currently taking Meloxicam) which does help a little bit and take the edge off but that is all it does. Yesterday she said it's possible I have MCTD as I have so many symptoms which fall into the umbrella however my blood work is always normal.
I am frustrated, scared, annoyed, and in pain. I hate my body for having normal blood work. No one wants to have bad blood work but I am literally praying for it.
How did those of you with seronegative blood work get diagnosed? How long did it take?
I have been suffering for 7 years with joint pain, muscle inflammation, rashes, dizziness, numbness/tingling, fevers, etc... My blood work will sometimes show a low positive ANA when I am in a full flare but for the most part my blood work is always normal.
I was put on prednisone for one month 5 years ago for a case of uveitis and it was the only time in 7 years that I was almost completely pain free. I felt great and it was so refreshing but after being off prednisone for about a month everything slowly started to creep back in again.
I have so much inflammation in my body that my doctor finds it surprising to see my SED rate come back normal. You can feel the inflammation in the areas which hurt like my hands and feet yet tests are always normal.
This year I have been in one of the worst episodes I have ever had. It started in January and it just seems to be progressing. I always have mild pain and mild neuropathy but this has been debilitating and exhausting. I am so tired all the time, my joints in my hand are swollen/red/painful, I keep having fevers especially on days where my joints seem to be flaring the most.
I just need a diagnosis to start proper medication but all my doctor seems to want to give me right now is an anti inflammatory (currently taking Meloxicam) which does help a little bit and take the edge off but that is all it does. Yesterday she said it's possible I have MCTD as I have so many symptoms which fall into the umbrella however my blood work is always normal.
I am frustrated, scared, annoyed, and in pain. I hate my body for having normal blood work. No one wants to have bad blood work but I am literally praying for it.
How did those of you with seronegative blood work get diagnosed? How long did it take?
Which tests have they run? Have they run the anti-RNP and double-stranded DNA?
Your symptoms sound similar to mine when I was in my late teens, except I never had the swollen joints. What they used to do for that was low-dose prednisone on alternating days, staring at about 10mg and then seeing if they could taper down to 7 or 5.
I don't know why they don't do that now. I know that prednisone is hard on you body, but I don't seem to have suffered many ill effects, and I did that for years. You are also young, and prednisone is easier to tolerate if you're under 40.
If you're lucky, you could drive whatever it is into remission, with only occasional flareups, for a while.
Don't pray for bad blood work-- though believe me, I understand totally. The problem is, it's not as if once you're diagnosed, you get treatment and just like that, your symptoms are gone.
Hang in there, check back later and let us know how you're doing,
--Cat
I recall the frustration in not having a diagnosis; it took a couple of years of different tests performed for mine. Once diagnosed I thought that my rheumi would fix the problem and I would be on my way ... silly me! It did not work out quite the way I anticipated. However, the information and support I have received from this group has given me hope and eased the frustration.
I don't want bad blood work but i almost feel that is the only way to get them to actually treat me for anything. I have a done a lot on my own over the past 7 years. I cleaned up my diet by eliminating most grains especially wheat, eliminating processed foods etc... I lost 50 lbs and try to exercise more when I can. This has not been possible the last 4 months. Surprisingly I lost 30 lbs the one month I was on prednisone which my doctor found extremely odd. Any thoughts?
Also would you know what blood work I should have her do if she has not done them all ready?