Author Topic: Back on the diagnostic merry go round  (Read 1462 times)

Cassi307

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Back on the diagnostic merry go round
« on: September 23, 2013, 03:07:37 PM »
I was diagnosed with high inflammatory markers and clear Sjogren's marker in March. I was referred to a rheum and was assigned the PA. I was placed on Plaquenil. It took close to 6 months but I started to have a reduction in joint pain but suddenly began to have new symptoms such as muscle weakness and chest pain and then tremors.

The PA/rheum kept insisting that I was developing fibro despite not having any of the other symptoms. The last time I spoke to her she said all she could do was give me Cymbalta. Something did not feel right about this.

I am glad I listened to my instincts and went back to my primary who is one of the best diagnosticians around. He listened and told me that there is no way she is right. He did a fresh panel of labs and my SJS level is high again and so is my cpk and crp. He thinks it is mixed connective tissue disorder. The good news is that my creatinine while still high has remained stable. I will be going to see a rheum who specializes in autoimmune disorders so that is a good start.

So my question is who here has mctd disease and what can you tell me about treatment and prognosis in general? I really am desperate to feel better and increase my level of function.
« Last Edit: September 23, 2013, 03:19:55 PM by Cassi307 »
Sjogren's, seronegative RA,  ckd, hyperparathyroidism, asthma,  osteoporosis,  Meds:  amlodipine, low dose Prednisone, calcium, sodium bicarbonate. Also, multivitamin and B complex

Joe S.

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Re: Back on the diagnostic merry go round
« Reply #1 on: September 23, 2013, 04:05:04 PM »
I do not have it but I suggest that you understand your Sjogren's decided to throw a party and invited a friend.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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Cassi307

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Re: Back on the diagnostic merry go round
« Reply #2 on: September 23, 2013, 05:05:34 PM »
Joe
.party crashers came without an invitation.I have a good mind to throw them out.
Sjogren's, seronegative RA,  ckd, hyperparathyroidism, asthma,  osteoporosis,  Meds:  amlodipine, low dose Prednisone, calcium, sodium bicarbonate. Also, multivitamin and B complex

slccom

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Re: Back on the diagnostic merry go round
« Reply #3 on: September 23, 2013, 10:39:42 PM »
Just call the police, and they will take care of it!

I'm so sorry. You don't need this!

Hugs, Sharon

Tivia

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Re: Back on the diagnostic merry go round
« Reply #4 on: September 24, 2013, 09:32:24 AM »
Cass, are you ck levels high all the time? I was having muscle weakness and some tenderness in the major muscles thigh, upper arm torso this summer. Got to the point I could barely get up the 2 steps to my door. Those symptoms coupled with nailfold changes sent my rheumy into a panic she immediately tested my cretinine kinase..it came back 589!!! So she said that with the other changes I had were indicative of a disease  called dermatomyositis. This is now what she thinks I was developing all along, she said she expected lupus or sclero to pop up never this. But you never know what will pop up, they all seem to be dif symptoms of the same illness imho.

paisley62

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Re: Back on the diagnostic merry go round
« Reply #5 on: September 24, 2013, 09:43:05 AM »
Cassi,

You were likely diagnosed with Undifferentiated Mixed Connective Tissue Disease UCTD.  I was once diagnosed with that, prior to being diagnosed with Sjogren's.

UCTD has a relatively mild, non progressive, prognosis.  It is an actual disease with it's own diagnosis code in the medical coding.  It means you have various, and very real, connective tissue disease symptoms, but no classic combination that is strong enough to sort out Sjogren's, Lupus, or Scelroderma.

If UCTD does not change within the first couple of years, then it will most likely stay UCTD.  This is what you want.

If the condition progresses and the lab test indicators get stronger and more numerous, but there is still no definite diagnosis of Sjogren's, Lupus, or Scelroderma, then you will get rediagnosed as having Mixed Connective Tissue Disease MCTD.  This is also a definite illness with it's own diagnostic code and prognosis, different than UCTD.  The prognosis for the MCTD is more serious - this illness can be progressive and cause much more trouble, such as with inflammation, than the UCTD.

The UCTD can also bloom into Sjogren's, Lupus, or Scelroderma.

My diagnosis of UCTD was later changed to Sjogren's, however, my UCTD did not convert to Sjogren's.  It was simply that they did not test for Sjogren's when they diagnosed me with UCTD.  The first time they tested me for Sjogren's a year later, I was diagnosed with Sjogren's.

I hope this helps.  I also hope that you continue to have UCTD, which is bad enough by itself, and not the more serious MCTD, Sjogren's, Lupus, or Scelroderma (or some other really rare connective tissue disease). 

None of these diagnoses are qualitative, based only on symptoms.  All of these diagnoses are based on lab test results in combination with symptoms.

« Last Edit: September 24, 2013, 09:45:53 AM by paisley62 »