Just diagnosed with mctd- very scared...

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superloopie
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 6/28/2009 12:46 AM (GMT -7)   
I haven't had the time to go through these boards very well, but I am looking for information on mixed connective tissue disease.  I was just diagnosed 2 weeks ago and am really scared.  I have 5 children and worry for their future as well as my own.  My blood pressure started running high about 8 years ago after my daughter was born but returned to normal about 3 months later.  I was a surrogate for my sister 2 years ago, once again only having problems with high blood pressure for about 3 months after baby was born.  I have been healthy every since.  Last October my mother passed away after bing in MICU for 2 months.  She was only 56.  I spent the majority of time traveling to Arkansas where she was being cared for and traveling home to Alabama.  I found my joints becoming more and more sore but thought it was stress and waiting room beds that made me sore.  Finally, after months, I woke one morning unable to life my arms to even comb my daughter's hair. I couldn't brush my teeth my arms/ shoulders hurt to bad.. the pain has since moved to my wrists and fingers.  Blood work first showed my TSH to be around 15 and all else was forgotten... until I saw my doc,  My doc said my sm and rnp are high  my ana is positive as well as a centromere (?) test and that I have mctd and am on hydroxychloroquine 400 mg and prednisone 5 mg. 
Can anyone tell me anything bout this disease?  Can I still live a long life?  My bp still fluctuates but doc isn't worried.  I don't sleep much- because as stupid as this may sound, I am afraid of not waking up-- and worse, my children finding me.  Looking for any advice as to what I can expect as much of what I have found on the internet scares the crap outta me.  Thanks
Loopie

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/28/2009 8:23 AM (GMT -7)   
Loopie,
 
I also have mctd and had an extreme case.  However, every case is different and they range from almost not noticeable symptoms to life threatening. No one can tell you how yours will progress.  MCTD is a combo of lupus, scleroderma and polymyositis and you can exhibit symptoms of all 3 or any combo of them. 
 
Lupus hit my kidneys and joints and I had severe muscle pain and swelling in the first few months.  The main symptom I had from sclero is raynauds which is no big deal compared to everything else.  Polymyositis which is an idiopathic inflammatory muscle disease hit me the worst even though I was being treated.  I lost 40lbs of muscle in a week even though being treated with 60mg of pred for several months.  It was resistant to treatment and it took a maximum 5 day treatmtnet of ivig to save my life.  I spent many months in hospitals and was completely crippled and could not swallow anything.  It was terrible but my case was off the charts and not typical.
 
The reason I am telling you this is not to scare you but to give you hope.  I am not leading an active life playing golf, skiiing, tai chi.....well, you get the idea.  I will never be 100% again but life is good.  I am 66 by the way so recovery is possible even at my age.
 
I don't have a lot of time right now and will respond in greater detail later but I would recommend several things:
 
Get a second opinion.  You said you live in AL...there is a Mayos in Jacksonville.  Not sure if there are any good rheumys in AL or not. It is hard to find experienced docs to diagnose and treat this disease.  If you have a significant loss of strength you will need to go through physical therapy to get it back.  In some mild cases where the loss is minor it might return on its' own but in more serious cases it takes lots of PT and then working out on your own like I did it. 
 
Don't worry so much...you need your sleep.  Most likely, if you get the right docs and aggressively treat the disease you can live a long life.  I plan to make it to 95 and keep on skiing.  Don't take the stats seriously as they are based on only a few cases as this is an extremely rare disease that manifests itself differently in every case.
 
There is another forum you might want to post on.  www.myositis.org.  You will find others who have mctd.  The myositis component of mctd is usually the worst....but not always. 
 
Hang in there.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/28/2009 8:28 AM (GMT -7)   
Bill has a typo in his post that makes a HUGE difference - He wrote:
Bsime said...
The reason I am telling you this is not to scare you but to give you hope. I am not leading an active life playing golf, skiiing, tai chi.....well, you get the idea. I will never be 100% again but life is good. I am 66 by the way so recovery is possible even at my age.

But what he meant was "I *am* leading an active life playing golf, skiing, tai chi.....well, you get the idea." Bill has had one of the great recovery experiences we sometimes encounter. It does happen!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/28/2009 8:32 AM (GMT -7)   
Loopie,

I'm glad Bill responded to your post...I was sure he would because he has MCTD and has had a remarkable recovery. I'm also glad that you found this forum because you'll find some great support here.

Don't worry about not waking up. That's not how these diseases work, and yes, you can live a long productive life. I've been diagnosed with lupus for 5 years. I'm retired but still live a fairly normal life. The only difference between my life now and before is that (other than the fact that I have more doctors' appointments) I'm just not as active as I once was. I tire more easily and do have to deal with a certain amount of pain, but the right meds help immensely with that.

Have you been put on any meds? What is your next step?

You'll get lots of advice and suggestions here and I hope it helps. As Bill said, hang in there!

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/28/2009 10:18 AM (GMT -7)   
ooopppps....I AM leading an active and fairly normal life again.
 
Sorry, but I haven't found a cure for old age and senior moments....
 
Bill


MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


superloopie
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 6/28/2009 2:31 PM (GMT -7)   
Thanks so much for the replies. I try to not let the kids see I am scared, and as far as they know, I just take meds so that being in the sun isn't a good idea. I am trying not to worry, but I do find myself worrying over every sharp/ dull pain-- wondering if it is a symptom when before, I never worried about anything! I never even catch the flu! *knock on wood* So this was a huge scare to me. I want to be as normal as possible, so will try to live that way. Thanks again.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/29/2009 9:36 AM (GMT -7)   
Hi Loopie,

I know where you are coming from when you say you are scared. When I got started with all of this I just wanted to find out what was wrong with me, when I finally got a DX I was relieved but then reality set in and I got really scared. I constantly thought about my husband and my son and how life would be from then on.

The reality is though that, like in Bill's case, many who have the worst of it is because they haven't been diagnosed yet or just diagnosed when the worst happens. This 'thing' comes from left field and knocks them over. If you are diagnosed (and treated ) before you have any really bad problems, then chances are good that you can really manage your illness. Because you have numerous dr appts and testing, as redundant as they can seem, you are more likely to find things before they can get really bad and have them treated as necessary.

I hope that gives you a little peace of mind. So glad you found us here... Welcome again! :)


Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

Post Edited (dbab) : 6/29/2009 10:43:55 AM (GMT-6)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/29/2009 12:41 PM (GMT -7)   
Just for the record and not meant to scare anyone.
 
My diagnosis was deduced BEFORE I became symptomatic (except for the blood anomalies) as lupus and within a few weeks of becoming symptomatic, MCTD.  Treatment was started early and seemed to be holding my immune system at bay.  After a few months polymyositis, which turned out to be resistant to treatment, hit me hard.  I had been on 60mg of prednisone for about 3 months by then and lower doses earlier.
 
My case is not typical and it is true that many of the bad cases are undiagnosed, untreated, or treated improperly.  Some become difficult because patients refuse treatment.  That was not my experience.
 
Most cases if they are diagnosed promptly and handled by an experienced doctor can be brought under control but some cases are refractory and don't repond to standard treatment.  It took a 5 day treatment of IVIG to tranquilize my immune system but in my case the physical damage was already done.  A standard treatment of pred and imuran has kept any further attacks away for 3.5 years.....hopefully forever.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/29/2009 12:45 PM (GMT -7)   
ack!!!  I meant to say 'possibly' Bill, not 'like'.  Sorry about that.  blush
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

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