I have Hashimotos as of about 40 yrs ago and I'm sure there is something else going on. My ANA is negative, so my primary says I'm just fine. I'm waiting to see if a rheumatologist will see me.
I have had Fibromyalgia for the last 9 years and just recently diagnosed with the Undifferentiated Connective Tissue Disease. I have seen many doctors trying to cure my Fibro because my life has dramatically changed and I am no longer even able to work full time. So now with this new diagnosis of UCTD they gave me Plaquinel and I broke out in a rash all over. Now they are telling me that there is nothing else they can do for me and I am in pain every day , especially my legs.. I was in training for a half marathon before the fibro diagnosis and was running 3 miles a day and worked out at the gym. I have always been an a very active person and loved to push myself and now at only 49 years old I can barely walk some days the pain is so bad. I am at a loss as what to do next. I have spent a ton of money on doctors that can only write a perscription for theses "symptoms" when I am trying to get to the ROOT CAUSE of why this is happening to my body. My blood tests always show that I have a positive ANA and now I am out of money and hope that I will ever be normal again and enjoy all the things I use to be able to do. If there is new information on UCTD or possible "unknown Virus's " that is causing your bodys immune system to attack itself and obviously healthy tissue please post or let me know by email.. danasunlover4u@gmail.com. Thanks for taking the time to read this lengthy comment.
Seronegative they say fibro and then don't retest for years while people suffer! It takes years and unnecessary suffering! Us healthcare isn't about prevention! Mote money in disease...and pressing any issue now just gets you tossed out.
I have had Fibromyalgia for the last 9 years and just recently diagnosed with the Undifferentiated Connective Tissue Disease. I have seen many doctors trying to cure my Fibro because my life has dramatically changed and I am no longer even able to work full time. So now with this new diagnosis of UCTD they gave me Plaquinel and I broke out in a rash all over. Now they are telling me that there is nothing else they can do for me and I am in pain every day , especially my legs.. I was in training for a half marathon before the fibro diagnosis and was running 3 miles a day and worked out at the gym. I have always been an a very active person and loved to push myself and now at only 49 years old I can barely walk some days the pain is so bad. I am at a loss as what to do next. I have spent a ton of money on doctors that can only write a perscription for theses "symptoms" when I am trying to get to the ROOT CAUSE of why this is happening to my body. My blood tests always show that I have a positive ANA and now I am out of money and hope that I will ever be normal again and enjoy all the things I use to be able to do. If there is new information on UCTD or possible "unknown Virus's " that is causing your bodys immune system to attack itself and obviously healthy tissue please post or let me know by email.. danasunlover4u@gmail.com. Thanks for taking the time to read this lengthy comment.
Plaquenil caused me to have two months long bouts of severe hives all over my body. When I was working with an allergist he kept repeating, Get control of the disease and the hives will go away. Wrong! I stopped taking plaquenil well over a year ago and no hives. Plus, it caused terrible chest pains ( went to a cardiologist and had tests nothing wrong with my heart) and vertigo. I’m on no medication for this horrible disease and am getting worse. The rheumatologist only offers me plaquenil. I can’t take it. If I develop into RA perhaps he will offer me something else. My heart goes out to anyone with UCTD as it’s so painful. It’s taken over my life. Best of luck to you. Hope you get the treatment that works!!
I have Hashimotos as of about 40 yrs ago and I'm sure there is something else going on. My ANA is negative, so my primary says I'm just fine. I'm waiting to see if a rheumatologist will see me.
I have had Fibromyalgia for the last 9 years and just recently diagnosed with the Undifferentiated Connective Tissue Disease. I have seen many doctors trying to cure my Fibro because my life has dramatically changed and I am no longer even able to work full time. So now with this new diagnosis of UCTD they gave me Plaquinel and I broke out in a rash all over. Now they are telling me that there is nothing else they can do for me and I am in pain every day , especially my legs.. I was in training for a half marathon before the fibro diagnosis and was running 3 miles a day and worked out at the gym. I have always been an a very active person and loved to push myself and now at only 49 years old I can barely walk some days the pain is so bad. I am at a loss as what to do next. I have spent a ton of money on doctors that can only write a perscription for theses "symptoms" when I am trying to get to the ROOT CAUSE of why this is happening to my body. My blood tests always show that I have a positive ANA and now I am out of money and hope that I will ever be normal again and enjoy all the things I use to be able to do. If there is new information on UCTD or possible "unknown Virus's " that is causing your bodys immune system to attack itself and obviously healthy tissue please post or let me know by email.. danasunlover4u@gmail.com. Thanks for taking the time to read this lengthy comment.
Actually wanted to clarify that what they gave me was hydroxychloride, Im probabaly spelling it wrong but it is the generic for Plaquinel.
OK. Now a year and a half later.....any progress yet? Do we know how to diagnose and define this uctd any better now?
Seronegative they say fibro and then don't retest for years while people suffer! It takes years and unnecessary suffering! Us healthcare isn't about prevention! Mote money in disease...and pressing any issue now just gets you tossed out.
I have had Fibromyalgia for the last 9 years and just recently diagnosed with the Undifferentiated Connective Tissue Disease. I have seen many doctors trying to cure my Fibro because my life has dramatically changed and I am no longer even able to work full time. So now with this new diagnosis of UCTD they gave me Plaquinel and I broke out in a rash all over. Now they are telling me that there is nothing else they can do for me and I am in pain every day , especially my legs.. I was in training for a half marathon before the fibro diagnosis and was running 3 miles a day and worked out at the gym. I have always been an a very active person and loved to push myself and now at only 49 years old I can barely walk some days the pain is so bad. I am at a loss as what to do next. I have spent a ton of money on doctors that can only write a perscription for theses "symptoms" when I am trying to get to the ROOT CAUSE of why this is happening to my body. My blood tests always show that I have a positive ANA and now I am out of money and hope that I will ever be normal again and enjoy all the things I use to be able to do. If there is new information on UCTD or possible "unknown Virus's " that is causing your bodys immune system to attack itself and obviously healthy tissue please post or let me know by email.. danasunlover4u@gmail.com. Thanks for taking the time to read this lengthy comment.
Plaquenil caused me to have two months long bouts of severe hives all over my body. When I was working with an allergist he kept repeating, Get control of the disease and the hives will go away.
Wrong! I stopped taking plaquenil well over a year ago and no hives. Plus, it caused terrible chest pains ( went to a cardiologist and had tests nothing wrong with my heart) and vertigo.
I’m on no medication for this horrible disease and am getting worse.
The rheumatologist only offers me plaquenil. I can’t take it.
If I develop into RA perhaps he will offer me something else.
My heart goes out to anyone with UCTD as it’s so painful. It’s taken over my life.
Best of luck to you. Hope you get the treatment that works!!