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Mixed connective tissue disease :)

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Posted 9/20/2008 2:40 AM (GMT 0)
hi. Im new obviously and i guess i just wanted to say hello....
Posted 9/20/2008 3:32 AM (GMT 0)
Hi Prettiness,

 

Welcome to the forum!  When you feel up to it we'd love to know more about you.  Let us know if you have any questions,

 

Ginny

Posted 9/20/2008 3:47 AM (GMT 0)
Hi prettiness and welcome to the forum. I too would like to hear more about you. You'll probably hear from Bill since he also has mixed connective tissue disease. I hope you find this forum to be helpful. Many of us couldn't live without it. :)

Do let us know what's going on with you,

Pat
Posted 9/20/2008 10:47 PM (GMT 0)

I welcome you too Prettiness.  Hope to hear more about you.  I am fairly new myself, and did not know how to send posts in the beginning. :-)

Hester

Posted 9/21/2008 3:34 AM (GMT 0)
Tell us your story and ask all the questions you have. 

I had an extreme case of mctd and have recovered better than anyone.  Not too much I have not endured except lung problems.

Sorry you have this awful and rare disease and hope your case is mild and easily controlled.

You will also find an excellent forum with other mctd patients at www.myositis.org in the pm/dm community forums.

Bill

Posted 9/23/2008 4:38 AM (GMT 0)
Welcome to the forum Prettiness! Blessings!
Posted 9/23/2008 5:23 PM (GMT 0)

I, too, have MCTD. You can check my old posts for my story. I was diagnosed in Jan 08.  Fortunately my rheumy is treating me just as any of his lupus patients and not waiting to see if any of my diseases get worse.

Welcome to the board!  You'll find lots of good support and information here.

Have you discovered the site butyoudontlooksick.com?

Posted 11/23/2011 5:09 PM (GMT 0)
I am new to this Forum and I have MCTD. I was diagnosed in 2006 but I have delt with the symptoms since 2001. I have severe reynauld's which has turned into ganggreen (?). I currently have multiple ulcers on my fingers !! I have lupus spots on my skin. I get the shakes or tremors. One month ago I had an mri that shows my L4 and L5 bulging( it looks crushed to me). So now I cannot lift anything over 10 lbs. I am still working tho !!! I get very depressed but that is from low testosterone. I have supplemented for almost 2 years with pills and then cream and I cannot get my "Free" testosterone to normal levels. My last test was 5.3 ng/ml and normal is supposed to be 8.7 to 25!!!! I can barely walk because my left leg and hip and lower back are in pain almost always. I currently take oxycocet for the pain but I have an appointment with a pain clinic in January. Here is where it gets embarrassing for me !! my reynauld's is sooo bad that I get it in my Penis. I cannot get an erection at all. I am pretty sure that I have some nerve damage because of it. I have seen so many doctors that I cannot keep track. If I had a dollar for every time a doctor stood up at the end of my appointment and said " Sorry, I can't help you", I would be rich. I have noticed that a lot of posters are female and I understand that this is a disease that women generally get. I believe that more information needs to be gathered about males who contract MCTD. MCTD leaves you as a shell. From the moment I get up in the morning to the time I go to bed, my disease controls everything. Even my marriage is affected. I take more pills than anyone I know. I have to take pills every 2 hours and at night I wear nitropatches. I take losec so I can eat. The flap that is located at the top of my stomach is no longer there !! Chronic fatigue happens to me in waves. I have lost interest in almost everything. I could go on and on with this, but I won't. I will be honest and say this. The only relief I get from this is when I... It deals with the pain and relaxes my veins. I believe I am doing more damage by taking these opiod based pain killers and I am hoping the pain clinic will give me a script for ... Anyway......this is my story. I would love it if someone made comments on this ( good or bad )

Post Edited By Moderator (Lynnwood) : 11/23/2011 11:57:51 AM (GMT-7)

Posted 11/23/2011 6:56 PM (GMT 0)
Lord Rahl,

We have a male member with MCTD (I think that's what he has), I sent him an email asking hi to comment on your post. He may be able to help you more than I can.

I had to edit out a small bit of your post as posts regarding illegal substances are not allowed.
Posted 11/23/2011 9:44 PM (GMT 0)
Rahl,

I also have mctd and had a severe, life threatening case first diagnosed in 2005.  Lupus and an extreme case of polymyositis which left me a quadriplegic who could not swallow.  Fortunately, my docs were able to treat me and sent me to a rehab hospital where I made a remarkable recovery.  Also have several other secondary conditions, including raynauds and barretts esophagus (acid reflux caused by weakening of the spincter muscle at the top of the stomach).

Rheumatolgists are the best type of doctor to treat mctd.  Find one who has experience at least treating lupus which is very similar and is part of mctd.  What are you taking to control your immune system? 

Raynauds is also treatable.  Are you taking any meds for it?  It sound like it has been neglected since you mention gangrene.  That does not have to happen if treated properly.  It takes both suppressing your immune system and taking a med to counteract the effects of raynauds.  Pain killers are not a treatment that will help in the long run.

Where do you live?  What kind of a doctor are you seeing?  What meds are you taking for mctd, acid reflux, raynauds?

Bill

Posted 11/24/2011 3:10 AM (GMT 0)
I am sorry you had to edit my post. I did not realize that was not allowed. I will not do it again !!!

Thanks for the reply. I am not currently taking anything for immune suppressant. I am on 20 mg of Norvasc ( double max dose ). 4mg of Hytrin every 2 hours. 40 mg of losec for my stomach. Pentoxifilene??? It's a blood thinner. I use nitro patch .6 dur/h at night. I take alprazolam at night because I can't sleep and I used to get panic attacks. Since the alprazolam, the panic stopped right away. I used to work out a lot but I had to stop because of my back. I forgot to mention Sjrogren's , isn't that a treat !!! I need medicated drops to keep my eyes clear. I have lost 6 teeth due to severe dry mouth. The teeth decay very fast without saliva. I notice ringing in the ears a lot when my puradid ?? glands swell up. But the biggest mystery is my whole skeletal structure is changing. My calf muscle on my left leg is bigger, alot bigger, than the one on the right. My left pec muscle is twice as large as the one my right. After seeing the MRI results and a whole body xray, I now have scoliosis. My body is deforming very fast. Three years ago my wife noticed my calf muscle while bike riding. There was only a small difference then. And now I walk with a permanent limp and my right side of my chest cavity is sunk in. I find this disease snowballs. I have these powerful "waves" where the disease just kicks my arse. The reynauld's go into high gear, I feel sick and at least one major joint will hurt so bad that I can't move it. Anyway...... I see probably the best Doctor in Ontario ( and I've been told the best in Canada ) for MCTD. My doctor is in Toronto and I am about 2 hours away. I have a local rheumy but she is not good at all. She is very mean and has no "bedside manner" at all. I am very glad you made it through your worst days. I can only imagine what it must have been like, being that sick!!! I don't think I am as bad as that yet. I hope I never get there!! I used to think that eating perfect and exercising and taking all the right supplements would help keep it at bay. Unfortunately that is not the case. I believe it is still important though :) Thank you for letting me rant
Posted 2/20/2012 6:29 AM (GMT 0)
Hello, I'm new as well. Diagnosed with MCTD yesterday, just looking to get some information and talk to some people about this. I had a small stroke back in December at age 21, this is what sparked all the blood work and led to the diagnosis. My rhematologist suggests waiting until I have symptoms, which have not been apparent yet, thank goodness. Should I follow his advice or get a second opinion. I am not his biggest fan so if I had to leave him, I wouldn't be terribly disappointed. He also seems to think that the stroke and MCTD are not related, what is your experience/knowledge in this area? Thanks in advance for any help you can offer!
Posted 2/20/2012 9:57 AM (GMT 0)
I would like to welcome prettiness, kfn7453 and LordRhal to the forum as well. I know the folks on this site have been great.

LordRhal I too have low testosterone and Raynaud’s, you are not alone with the erectile difficulties because of this, I know it’s not something men really like to talk about, but I have to tell you I thought it was only me that had this problem. I know it has been very hard on my relationships, in fact it is normally causes the end of them. It’s a hard thing to talk about with a new girlfriend, so I’ve been going through life pretty much on my own and yes that can be very depressing. I have given up on relationships, but its tough starting out.

I was off work for two years because I could no longer do my job as a Marine Engine Mechanic, but I fought to get back in an office job and I plan to do that for as long as I can. When I could no longer do my mechanic job I had to see a counsellor, because I was so depressed. I’m a big 300lbs guy that worked as a night club doorman for 11 years and was one of the strongest guys at the maintenance yard. Now I have trouble lifting 20lbs and boy does that hit you were it hurts.

What I’m trying to say is I can relate to your situation. I hope it helps to know you are not alone out there. So hang in there.

Bryan
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