Took three years for diagnose and was just told have MCTD

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embracenews
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Date Joined Jan 2012
Total Posts : 2
   Posted 1/21/2012 9:53 AM (GMT -6)   
This forum is very helpful. Last year I was told that I have Multiple Myeloma and had to go to an Oncologist. He told me that I did not have it and that I have Reactive Polycolonalhypergammaglobulinemia and antibodies to MCTD. The Rheumy did not care to hear that. My ANA was negative so in her eyes nothing was wrong with me. She is the one who told me that I had Multiple Myeloma. Yesterday the Oncologist told me that he was taking the position of a Rheumatologist to tell me that I do have MCTD. A month ago I was having fever for no reason, I get tired very easy and I have lost weight. This all started two years ago. It felt like there was something swollen at the lower right of my stomach. Went to the doctor they found nothing, but I was anemic severely. A few months later I started having severe pain and was rushed to the ER and was told that I had kidney disease or Multiple Myeloma. The MM was ruled out by specialist. My kidney begin to get better and I begin to feel better. Months later I start experiencing Raynaud's, then pains in my joints, especially fingers and hip. I begin to feel better. It comes and goes, I can feel great for weeks or months and then suddenly I begin to feel sick, tired etc. I have a new primary so he will be looking over the records from the Oncologist and we will go from there. Have anyone experience this, because it has taken a few years to find out what's wrong with me. I have been to over six different doctors to find out what was wrong with me and most scratched their head.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 1/21/2012 10:57 AM (GMT -6)   
I also have mctd and had an extreme case.  It was probably "lurking" for 15 years before I became symptomatic because I had mild anemia and low platelets.  In Sep 2004 I had a routine blood test (No symptoms and felt good) and it showed my platelets in the 20s.  My internist sent me to a hemotologist and after 9 months of tests and more tests, nothing.  He speculated that I might have lupus.  2 months later in July 2005 I became symptomatic and by then was seeing a rheumy who said I had something more, probably mctd but it was another 3 months before it was confirmed. 
 
My point is that mctd and many other AI diseases are extremely difficult to diagnose and there are many patients who have gone through diagnosis hell that lasted months or even years.  It is unusual to get a certain diagnosis quickly.  My docs were on the trail but it took over a year to confirm the diagnosis.  My rheumy did start aggressive treatment but my case was resistant and lupus hit me very hard and polymyositis almost took my life.
 
Most cases are not like mine and mctd more often is not severe but chronic and difficult to treat.  Keep in mind that every case presents, responds to meds and progresses differently.  The main thing is to find an experienced rheumy and get treated.  Most cases are treatable and some, even mine, go into remission.
 
PCPs are usually not the best to treat mctd or lupus.
 
Bill

embracenews
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/21/2012 1:45 PM (GMT -6)   
Thanks Bill, I'm hoping to get a new Rheumatologist after my primary care doctor look over the records.

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/21/2012 11:27 PM (GMT -6)   
Yep..bill said it! I'm one that has gone thru Diagnosis (dx) hell. It took 3 yrs to get a dx & by that time I was bedridden & had ruined my career! My family, friends even ME - started questioning if this was real or imagined! The pain was verrrry real but when u keep getting told "Come back in 3 mos" ..the disappoint is hard to articulate!
BUT ..I finally did get a dx (uh..well several of them) & my family is behind me now & I feel supported. Embracenews..your time will come - Pls don't lose hope! Hugs to you!
Angelina.
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 1/22/2012 12:35 AM (GMT -6)   
I am nearly 5 years in, still with a diagnosis of UCTD.  Been taking Plaquenil for 3 years (with Pred for flares)- which has been a big  help, but I'm still nowhere close to being the person I was before it all began.  It's been an exhausting and frustrating time - and I know there are many who have traveled the same road.  I've quit working and given up many of my energy consuming hobbies and projects, and lost friends to the fatigue and pain that make it hard to keep up with the simplest activities.  Sometimes phone calls require too much energy.
 
It is frustrating to see the rheumy for 15 min. every 3 months.  If you don't appear with severe symptoms on that day, it seems all the other days of feeling exhausted, fluish, feverish, and  in too much pain to climb the stairs or make the bed,  just don't count.  That said, I do remain grateful that I haven't had serious problems with organ involvement. 
 
Angelina - glad you have your dx and the support of your family.  Embracenews - good luck to you - I hope you will find doctors who have the skills to sort things out.....soon! 
 
 

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/22/2012 2:02 AM (GMT -6)   
Hugggsss Embrace. You hang in there. We all know its real hard. We also know most doctors are needing new med training :p Perhaps consider an oncologist and rheumy at a teaching hospital. Teaching hospitals have the newest med training, med equipment, meds, so on
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~
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