Hi everyone,
I've been roaming around in here for days and thought it was time to register so I can share too. Reading the supportive posts and kind words exchanged has been encouraging...
I'm almost 50, recently separated female, diagnosed with MCTD based on a positive ANA, over 2400, speckled and RNA of 8.8.
I've been feel crappy for about a year, so unbelievably tired after not much output, pain in knees, ankles, wrists, shins and shoulders feel 'crunchy' and hot, seemed like i hurt 'all over'. (thought it was old age, my weight etc.)
I finally went to GP on July 21, 08 because along with all of the above, I couldn't flatten my feet to the ground and my pinky fingers were 'curling' in towards my hand... some fingers and toes were numb some ached. I thought it was 'bout time to check this out...
GP did bloodwork, saw the results and sent me to rheumy, I had first rheumy appt 2 weeks later. More bloodwork, clearer picture. Next appt on Aug. 8, 08 received firm diagnosis of MCTD.
Went home shocked and cried for two days. Why me, why now, darn and I'm alone now too..
I knew I had to get to work learning about this disease. I planned to limit myself to a few hospital sites such as Mayo and Harvard so not to be overwhelmed and started reading... Once again I cried, the prognosis sections were horrifying to me, but I couldn't stop reading...
This MCTD overlaps with so many other conditions, for me there is a supposed overlap with scleroderma. But rheumy mentioned polymysositis and raynauds, I definetly had symptoms for Raynauds, fingers getting white and stiff after cleaning snow off my car.. :lol: they eventually went back to normal, so no problem.........
I have appts for chest CT, pulm functions, echo, long bone xrays, abg's, and physical therapy... all in one day !!! should be interesting... I fig why not get it all out of the way at once.... hope I don't regret it...
To complicate things a little more I also carry diagnosis of antiphospholipid and anticardiolipin Ab, diag after leg clot and lung clot and 2 miscarriages all spread over 10+ years. Also have had optic neuritis/papilldema........ all over the last 10 years, they were addressed individually but within the last month have been all connected to MCTD... I've been quite the medical weirdo for years.... having all these 'rare' bloodwork and incidental findings like the optic nerve stuff, that was a finding on a normal eye appt. The doctor looked shockingly at me and said do you have a headache ? "what is your GP's name", I have to call him now.... I was having a CT of my brain the next day because the optic nerve was so swollen they thought it was a mass... and on it went.
Throw in diabetes, high cholesterol, bipolar, anxiety... 13 meds and counting. Ok I think I'm done........
And if you are wondering, yes, I am going to rise to the challenge once again.
Thank the universe for a prompt and accurate diagnosis
And pray for a cure....
Good night all............ thanks for reading...perhaps weird, but it felt good to write it out.
I've been roaming around in here for days and thought it was time to register so I can share too. Reading the supportive posts and kind words exchanged has been encouraging...
I'm almost 50, recently separated female, diagnosed with MCTD based on a positive ANA, over 2400, speckled and RNA of 8.8.
I've been feel crappy for about a year, so unbelievably tired after not much output, pain in knees, ankles, wrists, shins and shoulders feel 'crunchy' and hot, seemed like i hurt 'all over'. (thought it was old age, my weight etc.)
I finally went to GP on July 21, 08 because along with all of the above, I couldn't flatten my feet to the ground and my pinky fingers were 'curling' in towards my hand... some fingers and toes were numb some ached. I thought it was 'bout time to check this out...
GP did bloodwork, saw the results and sent me to rheumy, I had first rheumy appt 2 weeks later. More bloodwork, clearer picture. Next appt on Aug. 8, 08 received firm diagnosis of MCTD.
Went home shocked and cried for two days. Why me, why now, darn and I'm alone now too..
I knew I had to get to work learning about this disease. I planned to limit myself to a few hospital sites such as Mayo and Harvard so not to be overwhelmed and started reading... Once again I cried, the prognosis sections were horrifying to me, but I couldn't stop reading...
This MCTD overlaps with so many other conditions, for me there is a supposed overlap with scleroderma. But rheumy mentioned polymysositis and raynauds, I definetly had symptoms for Raynauds, fingers getting white and stiff after cleaning snow off my car.. :lol: they eventually went back to normal, so no problem.........
I have appts for chest CT, pulm functions, echo, long bone xrays, abg's, and physical therapy... all in one day !!! should be interesting... I fig why not get it all out of the way at once.... hope I don't regret it...
To complicate things a little more I also carry diagnosis of antiphospholipid and anticardiolipin Ab, diag after leg clot and lung clot and 2 miscarriages all spread over 10+ years. Also have had optic neuritis/papilldema........ all over the last 10 years, they were addressed individually but within the last month have been all connected to MCTD... I've been quite the medical weirdo for years.... having all these 'rare' bloodwork and incidental findings like the optic nerve stuff, that was a finding on a normal eye appt. The doctor looked shockingly at me and said do you have a headache ? "what is your GP's name", I have to call him now.... I was having a CT of my brain the next day because the optic nerve was so swollen they thought it was a mass... and on it went.
Throw in diabetes, high cholesterol, bipolar, anxiety... 13 meds and counting. Ok I think I'm done........
And if you are wondering, yes, I am going to rise to the challenge once again.
Thank the universe for a prompt and accurate diagnosis
And pray for a cure....
Good night all............ thanks for reading...perhaps weird, but it felt good to write it out.
