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Posted 8/6/2007 10:56 PM (GMT 0)

I am new here. I was looking for a chat room for MCTD. This looked like the most user friendly, so here goes. I've had symptoms of Lupus for about 2 years now (labwork showed a positive ANA; speckled pattern). The past six mos. I started having new symptoms that were similar to sceroderma. My newest labwork shows a very high RNP and positive Sm. My diagnosis is MCTD.

I have Raynaud's which is getting worse, severe indigestion at times, GERD, and muscle pain and weakness. I appear to have limited Scleroderma. I say appear, because I don't have insurance and have been pushed around by doctors.

I had gotten used to the diagnosis of Lupus, but the Scleroderma shakes me a bit. I'm a nurse and I've always worked very hard. I can tell I'm slowing down and I know I won't be able to nurse much longer. I'm getting ready to do foster care. I've raised 5 kids; 3 in college, 2 teens at home and I do well with kids. (I can take a nap during the day and pace myself)

I saw a Rheumy once...they put me with a kid right out of school. She wrote everything the oppositite in her notes from what I told her. She wanted me to take Plaquenil. So far, I don't take anything but Lexapro for my depression, occasional Lasix for my swelling, and occasional Naprosyn for muscle and joint pain. I have a really high pain tolerance, but I can tell that things are getting to me. Occasionally I have a Decadron shot but can't have it often. I am scared to death of the oral steroids. (sometimes I think it's bad I'm a nurse, because I've seen the side effects of treatment)

My lab was positive ANA (was done twice, both times was high with a speckled pattern) My ssDNA was positive, my dsDNA was negative. My RNP was very high and my Sm was positive. SCl 70 was negative, but I still have CREST symptoms.

Anyone else out there relating to any of this? Really just need to talk to someone who understands.

Posted 8/7/2007 12:29 AM (GMT 0)
I can understand the frustration in getting a diagnosis. It took a long time and many tests before I got a diagnosis and found a great doctor. Most people, except here of course, do not understand the frustration. Lupus is so hard to diagnose and no two patients are alike. I do not take any steroids by choice. I have a blood clotting problem and am afraid to take anything that might interfere with my Coumadin. I was lucky enough to live through 1 clot that went through my lung and was lodged between my heart and my lung. I was getting brushed off by doctors at the University of Pennsylvania hospital. Finally the head doctor there confirmed the diagnosis and then I changed insurance plans. I had to find another doctor. I found another one about an hour away and started seeing him. He is very kind and understanding and genuinely cares about my well being, not only physically but emotionally as well. I am blessed to have a wonderful husband who understands and is very supportive. I have had positive and negative ANA results. I have joint pain. I wear two splints on my hands that basically stop me from using my thumbs due to severe joint damage. I can be emailed at [email protected] any time.
Posted 8/7/2007 12:34 AM (GMT 0)

Hi Foster mom, welcome to the group! we are a pretty friendly bunch here. I havn't been on in a couple of days but usually you can't keep me away because there are so many great people here.

I'm sorry you are going thru all of this. It seems we all know the doctor shufle I'm afraid. I suffer from most of the same symptoms that you do. The last time I saw a rheumy he said possible scleraderma also. I can't say as I blame you about the steroids. I have other physical problems and have had to take them for quite some time on and off. I hate them. Most of us hate them but somtimes they are the only thing that helps. It is a wonderful drug for inflamation and helps combat the fatique sometimes. The side effects are just horrible though. I really don't mean to state the obvious but it sounds like you need to see a rheumy and get some meds figured out. I know there are others on here that don't have insurance. You'd think that your work would have health insurance since you are a nurse. It sounds like a good idea if you like kids and it sounds like you do. Just don't try to over do it. Getting tired is one of the worst parts for me and I have no children at home. Well I just wanted to say hi and I look forward to getting to know you. I'm sure others will be around soon

Hang in there we get thru this one day at a time

hugs

carol


Posted 8/7/2007 4:13 AM (GMT 0)
Hi Foster Mom,

Welcome to the forum. If you're looking for someone who understands, you have come to the right place. While our stories are all a little different, we all suffer from one AI disease or another and I think you'll find that this is a wonderful and supportive little family that is always there for each other.

It's sad that you're going to have to give up a career that you love but it does sound like you have found a good alternative. I always hate to hear some of the people here struggling with their disease and having to get up and get dressed and go off to an 8 to 5 job every day. I find that the more rest I get, the better I feel. If your disease were to go into remission, would you take the opportunity to get back into nursing?

My best friend has scleroderma and reynaud's and although she walks with a cane and has her bad days, she's has a very active career, travels a lot, and unlike me, enjoys the sun and heat because it makes her feel better. She lives in another state but we try to see each other every year or two. My health has been worse for the past three years than hers, so it's all a matter of the level to which the disease has progressed or how successful treatment is.

Had I had any idea of the side effects of prednisone I wonder if my rheumy would have been able to force me to take it, but I've been so sick that even all the weight gain is worth it when I find myself feeling better. I can tell an almost immediate difference in how I feel when I increase (reluctantly, I might add) my dose. I'm trying to taper off completely but so far haven't been successful

I hope you find a rheumy you like. Like Carol said, many of us have experience with the doctor shuffle as well as being in diagnosis limbo.

Let us know how we can help. I'm glad that you're here.

Pat
Posted 8/7/2007 3:38 PM (GMT 0)

Thank you all so much for your replies. My husband is very supportive too...but they still don't really understand. It's nice to be able to share with people that go through some of the same things.

I DO need to go to a doctor and I do need to get on medication. You have all convinced me of that. :-) I work for a small rural health clinic. We have a nurse practitioner on staff, but she doesn't know much about AI diseases. I am going to make an appointment with a GP next month and then see a rheumy. We have a new female one here close...so hopefully, we will bond.

I think what scares me the most is not what's going on now...it is what is going to happen in the future??? confused I am trying to take life one day at a time. I have very good church members that try to understand and be there for me. I'm glad I found this site. I've learned alot reading the other entries. Thanks again...God bless you all. Kindred Spirits.

Posted 8/7/2007 4:18 PM (GMT 0)
Foster Mom,

I also have a wonderful supportive husband and all my kids, step-kids and daughters-in-law are wonderful and understanding, but like you said, they really don't understand. They know if I'm having a good day or a bad day and never press me to do anything I'm not up to doing, but we really don't talk about it. I just hate that I can't be the wife and mom I used to be and when I try to do too much I flare. When I flare I tend to get down emotionally too, but I really have come to accept my disease and I don't fear the future. Once you get in the hands of a good rheumy and after you get on meds that you feel will help you, I hope your fears subside. Understand, though, that many of us have had to try more than one rheumy to find one that's a good fit.

Prior to going to the doctor, we suggest that you arm yourself with a written list of all of your symptoms, past and present, a list of any meds you're on, and copies of any lab reports. I find that sometimes when I'm in a doctor's office I get distracted, forget things, and so on, so being able to hand your doctor a list not only helps you, but it's a good resource for your doctor. I keep mine on my computer so I can edit the lists every time I go to the doctor.

You may find that your doctor will be more open with you since you're a nurse, and that will be to your advantage. I hope you are able to get an appointment soon. Be sure to let us know how you're doing and how your appointment goes. In the meantime, I look forward to getting to know you better.
Posted 8/8/2007 6:51 PM (GMT 0)
Welcome to you, Foster Mom. I'm fairly new here myself. This site is a great source of encouragement, understanding, as well as a healthy outlet to release frustration. Just reading these posts, you can find very helpful information for things you may be dealing with. The compassion you receive here obviously comes from people who have experienced this disease first hand; and because of that experience, you get useful information that's hard to get anywhere else. I too, have played the doctor shuffle game. From initially changing my PCP because of his not listening and therefore not understanding leading to several misdiagnosis; to finally changing my Rheumy a couple of times because of their inaccessibility. I hope you are able to get things worked out for yourself. If you stay at this for very long, you will feel you've earned your own medical degree. Just try not to get frustrated. Giving up is not the answer. Good luck to you, Sharon
Posted 8/10/2007 3:51 AM (GMT 0)
Foster Mom,

I have mctd and had an extreme case.  It was resistant to prednisone and PM almost killed me.  I lost 40 lbs of muscle mass in a week and started 2006 as a quadriplegic who could not swallow.  It attacked my kidneys, gave me auto immune induced hepatitis and affected my entire digestive tract. That is the bad news.

The good news is that I survived and have recovered substantially.  My story is a long one but one of hope.  The most important thing is to get a definitive diagnosis and then start aggressive treatment.  You cannot let fear of side effects stop you from getting treatment.  What you have is potentially more dangerous than the meds.

You can search my posts for my full story.  Do not hesitate to ask questions or email me if you do not want to post them on the forum.

By the way, I started playing golf again this year and hope to return to climbing and skiing later this year. 

But you need to find an experienced doctor or clinic and start aggressive treatment.  Prednisone is usually prescribed initially and then something else (like imuran or methotrexate) added so that you can taper off prednisone.  I am down to only 6mg of pred and 100mg of imuran (expect to be on that indefinitely) and should be off pred entirely in a few more months.  The worst side effect I had was hypertension which has been successfully treated and brought under control.  Imuran might be affecting my blood but that is not for certain yet and my rheumy reduced the dose 2 months ago.

A few other notes:  your swelling might be caused by proteinuria.  Treating yourself for muscle and joint pains is only treating the symptoms....you need to treat the cause.  Your depression is most likely a product of your fear.  Act to find an experienced doctor and that will also improve.....there is life with mctd.  Mctd is different in each patient so it is hard to predict what course it will take with you.....most do not have such an extreme case.  I have raynauds which seems to be going away after 2 years and Barretts esophagus thanks to PM. 

There are forums dedicated to myositis diseases and other mctd patients are there.  www.myositis.org and www.myositissupportgroup.org

Sorry you have this awful disease but it can be controlled.  By the way, I am almost 65 and intend to live at least another 30 years in good health.

Bill

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