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Undefined connective tissue disorder

Posted by tljam @tljam, Mar 4, 2012

New to this site, first time posting. Looking for input on UCTD I was a very active Crossfiter.. Finally found an exercise I loved and was addicted to.. Dec 10, 2010, changed my life completely. Felt like I had the flu, achy body, hot and cold chills, couldn't get out of bed without assistance.. I did get a little better after approx a week, but I continued to have hairloss, inflammation, raynaulds, achy painful muscles & joints. Sometimes I feel like I have injured a knee or ankle or wrist that could last for hours or days.. Goes away as fast as it came on.. I continue to have constant weakness, from lifting something to walking up a flight of stairs to unscrewing a jar.. I continue to have pain that can be excruciating at times.. All test had came back in the normal range except a mildly elevated RA.. In 2004 I had a similar flare up with a mildly positive ANA, but it went away and all test besides RA are with in normal limits.. My rheum. Put me on plaquinil and prednisone and no Savella.. I have an appt at the Mayo clinic in Minnesota in march.. Just looking for someone who is sharing the same sort of things..

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whitechinacat | @whitechinacat | Mar 4, 2012

I sympathize with you. I have had a lot of similar problems. I was initially given a diagnosis of UCTD from my rheumatologist. He thought it looked like it was developing into scleroderma though. That was a year ago and it is still "undifferentiated" which is a good thing, I guess. I've heard that diseases that take a long time to develop are often less severe than the ones that appear suddenly and are easy to diagnose. Who knows though, I don't feel lucky. ; )

I have a high positive ANA and once had a positive RF like you. Since then I've had these levels tested several times and the ANA always remains high, but the RF is now negative.

I also have the chills and hot spells, aching body, flu-like feelings, some weakness, and Raynaud's. I don't have a lot of inflammation though. My levels have always been normal somehow. I have other odd symptoms too - I have GERD (heartburn) which is really common in scleroderma, neuropathy (nerves malfunctioning causing tingling and other sensations like burning), migraines, and some skin issues (feelings of tightness, itching, and so on, even though my skin looks the same as always).

I've seen tons of specialists and they even disagree about whether I have UCTD or not. Feel free to ask me questions or send me a personal message to talk about any of this.

REPLY
3 replies
tljam555 | @tljam555 | Mar 4, 2012
In reply to @whitechinacat "I sympathize with you. I have had a lot of similar problems. I was initially given..." + (show)
@whitechinacat

I sympathize with you. I have had a lot of similar problems. I was initially given a diagnosis of UCTD from my rheumatologist. He thought it looked like it was developing into scleroderma though. That was a year ago and it is still "undifferentiated" which is a good thing, I guess. I've heard that diseases that take a long time to develop are often less severe than the ones that appear suddenly and are easy to diagnose. Who knows though, I don't feel lucky. ; )

I have a high positive ANA and once had a positive RF like you. Since then I've had these levels tested several times and the ANA always remains high, but the RF is now negative.

I also have the chills and hot spells, aching body, flu-like feelings, some weakness, and Raynaud's. I don't have a lot of inflammation though. My levels have always been normal somehow. I have other odd symptoms too - I have GERD (heartburn) which is really common in scleroderma, neuropathy (nerves malfunctioning causing tingling and other sensations like burning), migraines, and some skin issues (feelings of tightness, itching, and so on, even though my skin looks the same as always).

I've seen tons of specialists and they even disagree about whether I have UCTD or not. Feel free to ask me questions or send me a personal message to talk about any of this.

Jump to this post

I also have heartburn, headaches and skin sores, nose sores and itchy skin, but I'm on hormone therapy. So I don't know if some of it is from that.. Have u been to the Mayo Clinic? I go March 13, 2012. Hoping I can get some answers there.. I have not been able to work out.. I still keep trying but can't even make it through my workout..

REPLY
palscoreen | @palscoreen | Oct 13, 2012
In reply to @whitechinacat "I sympathize with you. I have had a lot of similar problems. I was initially given..." + (show)
@whitechinacat

I sympathize with you. I have had a lot of similar problems. I was initially given a diagnosis of UCTD from my rheumatologist. He thought it looked like it was developing into scleroderma though. That was a year ago and it is still "undifferentiated" which is a good thing, I guess. I've heard that diseases that take a long time to develop are often less severe than the ones that appear suddenly and are easy to diagnose. Who knows though, I don't feel lucky. ; )

I have a high positive ANA and once had a positive RF like you. Since then I've had these levels tested several times and the ANA always remains high, but the RF is now negative.

I also have the chills and hot spells, aching body, flu-like feelings, some weakness, and Raynaud's. I don't have a lot of inflammation though. My levels have always been normal somehow. I have other odd symptoms too - I have GERD (heartburn) which is really common in scleroderma, neuropathy (nerves malfunctioning causing tingling and other sensations like burning), migraines, and some skin issues (feelings of tightness, itching, and so on, even though my skin looks the same as always).

I've seen tons of specialists and they even disagree about whether I have UCTD or not. Feel free to ask me questions or send me a personal message to talk about any of this.

Jump to this post

I'm wondering what you found out at your appointment. I recently started swollening in the wrists, hands, ankles, and feet. I'm stiff and achy. My knuckles are so swollen that I can't wear my wedding ring. My tongue gets swollen taste buds and feels like I burnt it. The Rhuemotology doctor so much blood work and baseline testing on heart, lungs, esophagus and stomach. All test come back normal. My capillaries in my nail beds are looped and he stated that along with my other symptoms (swollening, sides hurting, constipation, dry itchy skin, sores in nose, tingling in hands and feet, acid reflux, fatigue, feverish with no fever, chronic cold handsand feet, sensitive to temperature changes) that it could be systemic sclerosis. He is having me see a expert at the U of M. He called today to review the results of the anti-body tests and stated that I didn't have any present. He thinks it still could be systemic sclerosis caught early or undefined connective tissue disease. He has be on the generic plaquenil twice a day. He said that the swollening and aches should go away in 1-2 months on this medicine. I'm not a big med taker and don't like the thought of taking this medication. Any thoughts? What have you found out?

REPLY
tljam555 | @tljam555 | Oct 25, 2012
In reply to @whitechinacat "I sympathize with you. I have had a lot of similar problems. I was initially given..." + (show)
@whitechinacat

I sympathize with you. I have had a lot of similar problems. I was initially given a diagnosis of UCTD from my rheumatologist. He thought it looked like it was developing into scleroderma though. That was a year ago and it is still "undifferentiated" which is a good thing, I guess. I've heard that diseases that take a long time to develop are often less severe than the ones that appear suddenly and are easy to diagnose. Who knows though, I don't feel lucky. ; )

I have a high positive ANA and once had a positive RF like you. Since then I've had these levels tested several times and the ANA always remains high, but the RF is now negative.

I also have the chills and hot spells, aching body, flu-like feelings, some weakness, and Raynaud's. I don't have a lot of inflammation though. My levels have always been normal somehow. I have other odd symptoms too - I have GERD (heartburn) which is really common in scleroderma, neuropathy (nerves malfunctioning causing tingling and other sensations like burning), migraines, and some skin issues (feelings of tightness, itching, and so on, even though my skin looks the same as always).

I've seen tons of specialists and they even disagree about whether I have UCTD or not. Feel free to ask me questions or send me a personal message to talk about any of this.

Jump to this post

DX with seronegetive arthralgia which is another name for connective tissue disorder, which is an autoimmune disease... . And also DX with postural orthostatic tachycardia, which they feel is caused by the autoimmune. I'm now on plaquinil, low dose of prednisone and methotrexate (chemo pill) for the autoimmune, blood pressure med for the POTS..Mayo clinic said they think my rheumatologist is doing a fine job.. To stay on his regimen and recheck in a year.. Since then this autoimmune disease is messing with everything (autonomic system, blood sugar, blood pressure) and there r days that I am completely debilitated and in bed.. But I do have my good days as well.. I think for me, it's been well over 2 years since I have had this and I have finally excepted that I have an autoimmune disease and just need to concentrate on staying healthy as possible.. And do what works for me.. So I take the meds that r prescribed ( which I absolutely hate).. Continue to force myself to do my crossfit at physical therapy pace (not competition, cause that really messing me up and puts me down for days) eating heathly ( follow the Paleo diet) went down to 4 days a week of working (my PCP wanted me completely off work) stay connected with people that r going through similar things and understand, Join support groups/forum/FB.. And most important rest, which is the hardest part for me.. (Linda Hughes from Bellevue Mi on FB I have a dragonfly picture if u'd like to befriend me) I'm really sorry for what ur going through..

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