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Posted 6/23/2013 8:06 AM (GMT 0)
Aerayna I am sorry you are going through so much. A lot of your symptoms do sound familiar. I have undifferentiated connective tissue disease. This is similar to lupus and has some of the same symptoms. I too have to describe thing because. I cannot think of the correct word. I have rashes that are unexplained. I have joint pain and swelling and extreme fatigue. Have you had an ANA blood test?
Posted 6/23/2013 7:55 PM (GMT 0)
A lot of the Connective Disorder Tissue Disorders have the same symptoms so it could be any number of disorders. You have to meet certain criteria to get diagnosed with a specific disorder. I do not meet those criteria which is way the say Undifferentiated Connective Tissue Disorder. My Rheumy tells me many people never move out of this category into a more specific disorder. Or I could develope more symptoms or test results could change over time giving me a more specific disorder. The top 3 candidates according to my Rheumy: Sjogren's Syndrome, Dermatmyositis and Scleroderma. In the meantime I don't drive because I don't when or where one of my total zone outs could occur and I do not want to be behind the wheel when one occurs. I can't read a book anymore because I can't stay focused on the page. I miss reading, have been getting some audio books which is nice but not the same for the bookworm in me
Hang in the Aerayna! Others do not what you are going through. While I dislike all the pain to me that is not the worse. I hate the brain fog, fatigue and weakness more. Those make me not feel like me.
Posted 6/27/2013 10:28 PM (GMT 0)
Hi...I also am dx'd UCTD . Like you I have/am still a guinea pig for every test under the sun. It's soo beyond frustrating trying to get a clear cut diagnosis. Just this week I had an ENG and an EMG . Have had multiple mri's of every possible body part, blood work, sleep study, holter monitor, ct scans, cardio grams ....the list goes on. I truly believe its only a matter of time before my rheumy officially calls it lups. I have all the classic signs and symptoms. Honestly I don't know why he doesn't just say it already. It's harder to explain UCTD . I understand your frustration. Every time I go to the dr I get sent for another test. Hang in there.
Posted 8/13/2013 2:49 AM (GMT 0)
A referral to Neurology is being done because of the skin disturbances. Rheumy said he had never heard anyone say they feel raindrops on their skin.

Also plans to contact my Pulmonologist to see if he thinks a cardiopulmonary test might be helpful in determining the cause of my shortness of breath. My pulse was 120 at the Rheumy. He asked if I was nervous I told him my heart races with the shortness of breath. He asked how I got short of breath. Um walking to the building.

Of course they took more blood. Also gave me a shot. Not sure exactly what it was (some type of steroid, I believe). He told me what it was but I do not remember and it wasn't listed on my paperwork. The Plaquenil which I have been on since mid-March has had little effect. The swelling has actually worsened in the last 3 months. The shot was on Thursday and so far the only difference I can see is the swelling seems less. My ankles are still swollen but my feet do not look like the Incredible Hulk's feet anymore! LOL
Posted 1/10/2014 5:14 AM (GMT 0)
Swelling on my feet is finally under control. Ankles still slightly swollen. New symptom is itchy skin. They tell me that my skin is extremely dry. I have been using Cetaphil Cream daily (twice a day - sometimes more). So far it isn't helping with the itching. My feet however are not near as dry. Before I could have cut someone with me dry feet. LOL. The itching has been going on since before Thanksgiving. Been using the creams since before Christmas. On the plus side the raindrops, and pinpricks have stopped!
Posted 1/13/2014 4:17 AM (GMT 0)
Have you heard of dysautonomia? My boss has it -- I think it is kind of rare, and often overlooked as a possible diagnosis. I'm no expert, but thought you might want to look it up :)
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