UCTD and a GAZILLION symptoms

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Wild flower84
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/25/2011 11:47 PM (GMT -6)   
Hello Everyone- smilewinkgrin        
        Just to start off, reading everyones posts really helps me with all of the CRAZY symptoms I am having. I am a 26 year old female and feel like I have this huge weight on my shoulders, constantly. As of right now I have a diagnosis of UCTD, which even with my Rheumy saying that, he also throws out Inflammatory Bowel Disease with associated Arthritis. I just need to vent and learn some coping skills so that I don't fall into a deeper depression of what use to be and what I now am left with.
 
My mom has lupus and a ton of autoimmune diseases run in my family (Chrons, Arthritis, Ulcerative Colitis, Gout, Psoriasis, Muscular Distrophy, Miotonic Distrophy, Thyroid Issues.)
I won't even try to make this breif hahaha because I KNOW there has to be someone out there who has had these symptoms and this isn't an anomaly. As y'all know, these diseases really do have thousands of symptoms and take us all down so many paths and just make us feel crazy! :)
 
 Since my teens, I have always had problems with my back (herniated discs), achy hips, twitches, acid reflux (never diagnosed), which became normal for me but, once I looked around at my friends, I realized this wasn't normal for my age. Feb 2010, I had an acute inflammation of 3/4 of my colon, causing severe bleeding and inflammation. I was in the Hospital for 4 days, not able to eat, and on IV steroids. Once the inflammation was down, they performed a colonoscopy, which came back inconclusive and I was sent on my way. (On my way to feeling like I was hit by a MAC truck for the next week!) From that point on, I had small bouts of intestinal "discomfort" :) and inflammation.
 
 In Aug, I moved across the country to persue a better education. From Mid August it was ON! A slow onset of fatigue, intestinal inflammation, achyness, brain fog, stuttering, twitches, involuntary muscle movement, vibration in my right thigh.
In October I went to the doc for this onset and she ran a ton of tests and the only one that came back positive was my ANA. (1:160;smooth speckled pattern) A few weeks later, I had an accute flair up, which consisted of the following: Fatigue, fever but felt as though I was freezing, red feet, red legs, swollen hands, I felt as though I was burning up and felt like an infected pus wound, finger tips were off and on blueish purple. (That evening I went to Urgent care and the doc gave me 60mg of prednisone to tapor, and a referral to the Rheumy. By morning I coud barely move and was in the most excruciating pain I have ever been in. I felt as though my entire body was crushed from the torso down. Went to the ER (to wait for 3 hours, balling my eyes out) for them to give me morphine and send me on my way. Went to the Rheumy, ran the blood tests, WBC high, positive ANA and that was it. Put on Prednisone from Oct to Jan (WORST emotional ride EVER), tried Cimbalta for pain (didnt work), plaquenil, Sulfasalazine, hydrocodone, oxycodone and some others I cant remember. He thought it was Inflammatory Bowel disease with Arthritis (because of my  ONE bout in the hospital) Nothing was working and I was just as sick, daily. Moved back to California to see an AMAZING Rheumy, who has me on Sulfasalazine, which we are waiting to see if it helps. (Trial and error I guess) I have a low thyroid, Low Compliments, Positive ANA...
 
Now just waiting for a medication to stick. Don't care about the diagnosis anymore, just want to feel better. Currently applying for temporary disability. (Talk about a blow)
 
Any advice, words of wisdom, tips, stories of similar symptoms are So very appreciated. I'm so fortunate to have such wonderful support but, I keep falling in and out of depression and don't know if it is the illness, medication, or just me. I get so hopeless at times and it is almost painful.
 
Semi dx: UCTD Currently taking: Plaquenil, Sulfasalazine, Tramadol, hydrocodone, Vit D, Prednisone (20mg tapor)
       Have taken: Prednisone, cymbalta, and some others : )
 
 
 
 
 
 

 

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I have lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."

~Eleanor Roosevelt~

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 5/26/2011 8:05 AM (GMT -6)   
So sorry you are having such terrible problems. 
 
I have MCTD and it was a 15 month odyssey of trying to diagnose, getting sicker with more and more symptoms, and finding the right treatment.  Diagnosis and treatment hell.  Started with mild anemia, low platelets on a routine blood test but no symptoms so my internist sent me to a hematologist.  After 9 months found nothing but speculated I could have lupus.  2 months later I became symptomatic with many of the same symptoms.  Rheumy diagnosed mctd soon after and started aggressive treatment of 60mg pred.  A few months later polymyositis kicked in and took 40 lbs of muscle in a week.  It took a 5 day treatment of ivig to save my life and the rest of the story was to recover from PM.
 
Don't ignore new or worsening symptoms.  Finding the right treatment can be difficult in some cases so don't be bashful about seeking a second opinion.  These diseases are difficult to diagnose and treat.  I had 3 rheumies collarborating at one point and have had a team of doctors treating me for the past 6 years.
 
Ivig got mine under control and pred and imuran kept it that way since 2005.  No flares since but a long story about recovery with mostly good news. 
 
Hang in there...but be your own advocate.  Few docs are really experienced and even if they are every case is different.
 
Bill

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/28/2011 10:35 AM (GMT -6)   
Well dear I have to say hellloooo and welcome! LOL (that sounds rude of me but if I don't laugh at myself and our disease process I too would be depressed!)...Everything I just read about you(minus the inflammatory bowel part...I have IBS and GERD but colonoscopy & endoscopy revealed no Crohn's and/or UC, etc.)....I sound VERY similar. There are some things I have that you did not mention(Epilepsy-dx in 2003, had 3 seizures since I was 15 and neuropathic pain which started in 2008, Malar Rash & severe photosensitivity since childhood, mouth ulcers galore, and recently development of 2 bouts of pleurisy)...I would love to sit here and explain and describe everything I've ever felt but it would take me forever lol. I too was diagnoed back in 2009 with "UCTD w/SLE features." I just saw my rheumy earlier this month and she said that I don't quite fit into the category of Lupus as far as clinical trials go, BUT with the last bout of pleurisy she saw a definite decline in my blood levels(+ ANA(1:160 speckled pattern(are we twins?! LOL), Low complements and an elevated CPK/CK)...I was then put on Prednisone which I am still currently taking...after a week or so of the med I had more bloodwork and the levels started to decline. I have had to go back up a few mgs recently however due to returning symptoms. At the present moment though I am feeling alright. In seeing this decline and response to the Prednisone treatment she said that she would now consider me SLE/Lupus...I am just not eligible to be part of any cliinical trials for meds etc because I do not meet enough criteria. I have had symptoms for years and had a bad infection in 2008 right before everything started to get really bad to where I could not function.(I believe it was mono but they never were conclusive on it...103+ fever, couldn't move literally..entire throat swelled up and I couldn't breathe, ulcers, etc etc)...I was first put on Naprosyn(up to 1000mgs/day..)didn't work...then added plaquenil...i've been on that 2+ yrs and that isn't working..so now the pred...if I can't come off of it or if I have to take short term doses twice or more within a yrs time we are going to try Methotrexate...if that doesn't work....she mentioned I would be a good candidate for Benlysta(the new infusion drug for lupus)....so I too am in the same boat as you..struggling...I am also on temp disability and have been since I got pregnant with my daughter last Jan 2010....There's so much more to my story and so much more to share. I would love to hear more about you as well as we seem to have so much in common. I hope you are feeling ok today and can deal with the pain. I'm glad you find comfort in the posts. I've been on this site since before I was diagnosed and it has really helped me understand a lot and find comfort in others as well. Take care and will talk soon! -Brittanee
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-10mgs taper 1mg every 2 wks, Keppra-750mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Prilosec 20mg 1x/day,Vit. D 800IU's 1x/day, Allegra 180mg 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Forever_His_LadyBug**I

Wild flower84
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/28/2011 3:08 PM (GMT -6)   
Thanks for the responses : ) I knew there had to be someone out there with similar symptoms! You know, my mom has SLE and we too share some symptoms but, she has others that I can't even compare. I feel as though my bout of intestinal inflammation is sending my doctors down the wrong path, and treating me with Sulfasalazine. It IS possible to have SLE with intestinal complications but, I guess I will just have to wait and see. Both of you seem to be as frustrated as I am with this mysterious disease. I certainly don't want to have SLE but, I have a VERY strong feeling that it is and will FULLY rear its ugly head at some point or another. Do either of you get numbness or tingling in your body? There are soooo many other symptoms that I have but like you said, it would take days and pages and pages to even explain them all. Every time I lay down, my hands swell (especially my right) and become stiff. I use to get this radiating warmth that would radiate from my elbows down to my hands (almost like a wave) I often wake up in the middle of the night because my hand or hands are COMPLETELY numb. I don't sleep on them, they are usually rested by my side or on my stomach. And when I am laying down for 10 minutes or more, my thighs turn a reddish/purple color and sometimes radiate alot of heat, feel tight and almost bruised when I walk. So many bizarre symptoms... and one more... If I lay down for even 5 minutes, my body starts to heat up, ache, and I begin feeling inflamed. (Especially if I'm tired). I hope you all are doing especially well today! Cheers! blush

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/28/2011 8:40 PM (GMT -6)   
Numbness/tingling= yes...especially feet & hands but it also travels up my legs and arms if it is severe and I have also felt it in my face, mainly my lips before. I had an episode of this with a ton of other symptoms and went to the er because I thought I was having a mini stroke...they never even tested anything but blood and then tried to say I was having Angioedema(aka allergic reaction)...funny thing is I was sitting in front of a computer and had eaten lunch hours prior ..what was I allergic to the air??!? lol I mean c'mon duh...my rheumy even said that was not Angioedema but she couldn't say what it was due to not being there to physically see anything.

Hand swelling=yes....I haven't ever had it too severe..before meds it was more of a bad puffiness you could say. Although, I still wake up just about every morning with a puffy face especially around my eyes and my hands are puffy as well especially my right...(i'm assuming you are right handed? this is probably why as it is used to write with/do most tasks etc.)...My knees are my biggest joint culprit though even though all my joints are affected in my body. I wake up everyday sore and stiff in my entire body especially in my hands. I can't wear rings to bed because when I wake up they are stuck on my fingers.

The radiating warmth you speak of(I call it burning)= yes...again I get this too. Especially in my thighs...it comes along with aching a lot. It is also worse at night. I usually don't wake up from it but tend to have trouble falling asleep from it. My dr says it is neuropathic pain(nerve pain). I tend to have issues with insomnia itself though at times. The numbness actually helps with the pain..if I lay on my back really still, eventually I go so numb I can only feel the burning so it's less painful and I can get to sleep....(sounds pathetic! lol)...if I move after it's gone numb it's like a shockwave of pain and it stabs and aches and burns all at once...UGH...the radiating heat and redness in the thighs..SAME THING...this is all inflammatory I'm quite sure....although I've had negative EMG's and a negative small fiber nerve biopsy, they still think it is neuropathy..when you look that up with lupus it says that is caused by the PNS(peripheral nervous system)...PNS symptoms are then caused by the CNS(central nervous system)...those are 2 of the 3 parts of the nervous system directly affected by lupus...the 3rd(autonomic) controls involuntary action such as heartrate, blood pressure, digestion,body temperature etc.) I believe I have symptoms from all of these but like I said my rheumy will not agree with CNS Lupus diagnosis.....This could explain your last symptom as well you have listed. I suggest doing some research on Lupus itself especially since your mom has it already and see what fits you. No one that I know in my family has any AI disease(although I do not know my biological father or his family at all)....SO...I don't have much family history to go on...no one in the family has seizures either....so again...it's just me...lol...I am not feeling too bad today..just tired as usual....Hope you are well! Take care. -Britt
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-10mgs taper 1mg every 2 wks, Keppra-750mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Prilosec 20mg 1x/day,Vit. D 800IU's 1x/day, Allegra 180mg 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Forever_His_LadyBug**I
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