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Posted 1/28/2014 10:55 PM (GMT 0)
I have uctd and I have been having difficulty initiating a swallow for a few years. It is not constant and most of the time there is no problem. I am just wondering if this is related to the uctd and if it will get worse. Also I have flares of joints in my hands aching-is this normal or is the aching constant? The rheumy said that the uctd could turn into lupus so maybe I am being paranoid. I am also losing hair. Other than that and always feeling tired, I feel somewhat normal! wink
Posted 1/29/2014 12:39 AM (GMT 0)
Have you seen a gastroenterologist? There's a test or two they can do to see the cause of the swallowing problem.

I do have a slight swallowing problem but it was due to acid reflux.

My joint pains come and go. My hand pain depends on how much I do with them.

Try taking biotin to strengthen your hair. My hair has thinned since developing lupus but the biotin helps prevent too much loss for me.
Posted 1/29/2014 12:48 AM (GMT 0)
I have Connective Tissue Disease as well as Lupus and RA. My dr has never sais if it was uctd or mctd. Seeing as how I have several I guess you could say mctd.

Anyway,I have had the swallowing problem for many years. There have been times I have almost panicked because I would go to swallow and couldn't plus get a breath at the same time. I have had to put my fingers on my throat to try to help swallow. But it hasn't gotten worse that I can tell. Very weird as I thought it was just me.

As to the joints, it comes and goes and I have lost hair over the years. The fatigue for me is the worst but I also have Chronic Fatigue Syndrome. There are days I can't get out of bed or take a shower even.

Just a thought, you might want to find another Rheumy and get a second opinion. You only need 4 out of 11 criteria to be diagnosed with Lupus. It all depends on the dr.

I don't know if this helped you are not or just made you more confused but hang in there.
Posted 1/29/2014 1:06 AM (GMT 0)
I will try the biotin-i would rather not be as bald as my husband. As far as the swallowing, I've had an upper gi and they didn't find anything wrong but that was a little while ago so I may have to re-visit that issue. When I can't swallow I wind up choking. I understand where you are coming from plowgirl. I have to manipulate things to swallow sometimes. Thank you both for your responses, it is very much appreciated!
Posted 1/29/2014 3:19 AM (GMT 0)
MCTD is usually defined as have symptoms of SLE lupus, polymyositis and scleroderma but can include other autoimmune diseases. UCTD (undifferentiated CTD) is often given when symptoms and labs are not clear enough to diagnose mctd. The anti rnp antibody shows up if you have mctd.

The standard test for dysphagia is a video swallow test. Once diagnosed a speech therapist can work to strengthen a patient's swallowing muscles and teach strategies for swallowing and avoiding aspiration and choking.

Bill
Posted 1/29/2014 4:42 AM (GMT 0)
My swallow therapist made me learn this method:
Place small bite of food in mouth
Chew well
Place chin on chest and do a double forced swallow
If you still feel food do a second double swallow followed by water doubled swallow.
Posted 1/29/2014 1:09 PM (GMT 0)
A dear lady I work with has this problem with swallowing. She also coughs alot when she tries to eat or drink. She was recently diagnosed with acid reflux. She raised her bed so that she is almost siting up when sleeping and cut out caffeine and it seems to be helping her. Hot herbal teas will help too if this is what is causing your swallowing difficulty.

I can't imagine how scary this sort of thing would be and seeing my friend go through it makes me really feel for you all. Hugs
Posted 1/30/2014 4:37 AM (GMT 0)
I have UCTD and also finally had an upper GI test done due to intermittent trouble with swallowing. Nothing much was noted other than I clearly had trouble getting the tablet down for the test. A short course of Nexium seemed to help, but the trouble was back a year later, only worse, so I had an endoscopy done. This gave a much better picture of what was going on. I needed 2 dilations for strictures and definitely had inflammation and esophagitis with GERD. Is it from UCTD? I was told "possibly". And like you - I dealt with occasional minor bouts for years that didn't get addressed. I recommend you follow up with the GI doctor and get it investigated. It is important to treat, regardless of the source. And there may be some changes you can make yourself as Acquiesce mentioned. Dietary changes have been helpful for me. But an evaluation by a doctor is important.

As for the other symptoms you mentioned (painful joints, hair loss, fatigue) some days worse than others - very much a part of UCTD. I hope you are getting treatment with Plaquenil?
Posted 1/30/2014 3:05 PM (GMT 0)
I haven't been given any treatment as of yet. I will follow up with th gi specialist to see if he wants to do more. I see my rheumy in a month so all of these questions will definitely be addressed! Thank you all for your insights!!
Posted 2/5/2014 9:29 PM (GMT 0)
I've have the same problem. Had this problem for several yrs. was seen by a few drs and they would either tell me that it was of stress or acid reflix. I still been having the same problem as of now. I have trouble swallowing when drinking sometimes that I have to stop drinking and wait for the drink to go down or I have to spit it out sometimes because I start choking. There are times when I'm sleeping I wake up gasping for air sometimes like if I stopped breathing in my sleep. This just happens once in a while. I wonder if it's related to lupus.
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