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Newbie MCTD/UCTD


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#1 Climber

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Posted 21 February 2012 - 10:33 AM

I was diagnosed this summer with probable MCTD. I think the diagnosis code they gave it for insurance is UCTD. I don't think I have all of the criteria but I had a postive ANA, elevated sed rate, and positive RNP (4.6 where anything 1 or higher is positive) My rheumatologist sent me to Cleveland Clinic for a 2nd opinion. That rheumatologist did a nailfold capillarocopy and said mine had a scleroderma pattern.(which can also be found in MCTD). He said that MCTD is sometimes an early stage of Scleroderma. I have joint pain, reflux, gastroparesis, chronic gastritis, iron deficiency anemia, mild Raynaud's and mild erythromelalgia. I started Plaquenil 2 weeks ago and I'm on iron, omeprazole and levothyroxine( for Hashimotos). For the last month or more I have been having chest pain. I also for the last 6 months have SOB, fatigue, and palpitations but I just discounted them as they could be from the anemia, thyroid or MCTD. But with the chest pain I decided to have things checked out. Off to the rheumatologist's nurse practitioner who poked around on my rib cage and didn't think it was inflammation-- the pain goes to my back and so she was thinking pancreatitis or esophagitis. Off the the GI doctor I went and she did pancreatic enzymes and a ultrasound and found nothing but gallstones-- but all my pain is on the left not the right so she sent me to a cardiologist. He did a quick ECG(normal), holter monitor (no results yet), chest xray(no results yet) and a stress echo. I had the stress echo yesterday. The original cardiologist whom I really liked is out on vacation this week so I saw another who I was not too impressed with-- he just didn't seem to competent or experienced, didn't seem to know much about MCTD. I had to ask him to check for Pulmonary Hypertension and so he looked at it quickly as we were going over things and said the RVSP was 36.98 and for Pulmonary Hypertension it had to be 40 or above. I said isn't that getting close -- His answer was that these things progress very slowly and he would have an ECHO maybe every 2 years. He did one after exercise which he said remained the same but I know he sounded disappointed that there was some reading on the right side the sonographer didn't get after the exercise. This team definitely did not seem to be experts on Pulmonary Hypertension or Connective Tissue Disease. I will hopefully get a phone call next week from the original Cardio with the end results of all the tests. Just wondering if something like this needs to be checked out by someone more experienced or is an ECHO the same no matter who does it or interprets it. I just wish I could figure out what all this chest pain was all about.Thanks for any insights you can share. I've been lurking for a while and learning a lot but this is my first post. I hope it is OK if I join even though I don't have pure scleroderma-- I could learn a lot from all of you. Thanks -- Climber

#2 Sweet

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Posted 21 February 2012 - 11:34 AM

Hi Climber, welcome!
I'm really glad you've decided to post. It can all be so confusing, and bummer to say, it could be quite sometime before they nail all of this down. It sounds however, that they are really moving forward in order to give you some answers and that's great! Unfortunately with Scleroderma the symptoms, and progression can be so different for each individual that it's not always easy to give advice. I would take one day at a time, jump through all the hoops, and see where it all leads. It does sound like you are in good hands.


Warm and gentle hugs,

Pamela
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#3 Joelf

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Posted 21 February 2012 - 01:17 PM

Hi Climber,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with MCTD/UCTD. As you've probably gathered, Scleroderma and connective tissue diseases are by no means straight forward diseases to diagnose, as the symptoms can present very differently in many people.

It is quite important to consult a rheumatologist who is familiar with these complex diseases and who can decipher the results of your tests correctly. I've included links to Pulmonary Hypertension which includes one of Amanda's informative videos, and Frequency of Pleural Effusions in Patients with Pulmonary Arterial Hypertension Associated with Connective Tissue Diseases which I hope will explain some of your queries.

I'm very pleased that you've joined our community and started posting and I'm looking forward to hearing more from you.

Kind regards,

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#4 Amanda Thorpe

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Posted 22 February 2012 - 12:23 PM

Hello Climber

Although an ECHO can suggest pulmonary hypertension it cannot diagnose it, right heart catheterization is the only way to make an accurate diagnosis of pulmonary hypertension, have a look at our video about it.

The only thing I would say is have an ECHO every year, for scleroderma (a connective tissue disease like, well MCTD and UCTD) and yearly ECHO's are standard for the first 3 to 5 years so I would have thought they should also be in your case. Of course I'm not medically trained, just a person with scleroderma and scleroderma heart involvement.

Take care.
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#5 miocean

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Posted 23 February 2012 - 12:08 AM

Hi Climber, and welcome! :bravo: for joining in!

With all your issues you will be seeing many doctors and like many of us will be confronted with lack of coordination so please read my response to Mando on Primary Care Doctor about keeping records.

One thing I have learned is doctors go by the numbers. So 2/10ths off can mean you do or do not have something even though it seems like such a tiny amount. It's difficult to wait for the results of your tests to come in, but once they do your doctor will have a fuller picture and you can go from there.

I hope you get the chest pain issue figured out so it can be solved. Worry is not good for any of us. Keep posting and let us know how you are doing.

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#6 Climber

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Posted 23 February 2012 - 09:14 AM

Thanks for all great welcome, I've been learning a lot just lurking around the site for the past 6 months and reading all the wonderful information you have on here! I really appreciate this site.
Miocean, I have the same problem as Mando with my Primary Care. He was very willing to send me to specialists and willing to run tests that I ask for but he doesn't seem very bright or on the ball, I have to point out the test results that come out positive and I occasionally wonder whether he even reads all of my tests -- I also have had so many tests run so maybe I'm too complicated for him. But I don't mind too much, I just try to keep track of things myself. I learned about gathering up paperwork when I saw the rheumatologist at Cleveland Clinic - -I had to round up all my paperwork in less than a week -- boy was that difficult. I'm still a little slack in keeping everything but I know now I can ask for my results and I do try to do that much of the time. I just use my specialists for everything and don't even see much need in going to my primary it seems like a waste of time whenever I go there. I have always enjoyed research and health(although I never used to go to doctors I was a real natural remedies buff and hadn't gone to a doctor for years but none of my natural remedies were working and I finally had to break down and get some help) I went from never seeing a doctor to a whole big group of "ologists". I don't mind researching and keeping track of my own care. I'm strange in that I actually find it rather interesting and I don't tend to get too anxious --my faith keeps me at peace most of the time. The most difficult part is when you know something is wrong but you pass all the tests and no one can figure out what it is. I still have several symptoms like this chest pain that we just can't seem to pin down. Well, we'll see what the Cardiologist says next week. It is what it is! That's what the rheumatologist at Cleveland Clinic said his favorite phrase was when I tried to pin him down on what he thought about my case, he kept talking to me about Sclero instead of MCTD and I tried to pin him down-- if he thought that was where I was headed and his answer was-- It is what it is!

Thanks again to everyone for the encouragement and all I've learned on here -- hope you have a pain free day, Climber

#7 Joelf

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Posted 23 February 2012 - 02:43 PM

..........I went from never seeing a doctor to a whole big group of "ologists". I don't mind researching and keeping track of my own care. I'm strange in that I actually find it rather interesting...........


Climber, I can empathise totally with what you've said; prior to having Scleroderma, I'd barely had a day's illness in my life........I was far more chummy with my veterinary surgeon than I was with my doctor! I'm sure that my consultants thought me 'strange' (or a bit of a sad case! ;) ) when I told them of the many hours of pleasure it had given me to research all the details on the resume they sent me detailing all the medical and blood tests I'd had done!! :lol:

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#8 mando621

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Posted 25 February 2012 - 06:38 AM

Hi Climber,

I do research too, and that has been an issue for some of the doctors I've had. One asked me if I was studying to be a doctor. He didn't like that I'd looked up some numbers on Sjogren's.

That is one thing that has fallen into the crack of not seeing someone regularly. I also changed to a different rheumatologist, and it takes 4 months to get an appointment. I haven't had an ECHO or PFT since 2010. The last EGD was 2010 too. So far those tests haven't shown any problems, but when I read the PFT reports, it looked like things had dropped a bit on the second one, yet no doctor has been concerned yet.

Since I changed rheumatologists, I will probably have to go to a different lab and hospital to get those done, so I should be getting records from the other clinic before my March 6 appointment! Yikes. I forgot that. Good thing I've been reading here lately.

I have been labeled with UCTD since I don't have the antibodies to declare it scleroderma. One doctor I saw called it undifferentiated scleroderma. That bothered me a lot at first, but I've come to terms with it. I now consider it a good thing in some ways. Maybe it won't become full blown scleroderma. (not sure if I'm trying to talk myself into that one.)

My eyelids are getting tighter, which is weird. My mom's eyes are so baggy she always complains about it. Mine are exactly the opposite now. When I sleep, I seem to have trouble closing my eyes all the way especially if I'm laying on my side. I have to squeeze my eyes shut. So, if it continues, I guess I will have the benefits of the face lift scleroderma gives us without the label.

Mando.

#9 Climber

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Posted 25 February 2012 - 10:29 AM

Hi Mando, It is nice to meet with you. For the most part my doctors are okay with me researching. My rheumatologist actually told me to google MCTD, I guess it saved him time in having to explain everything. I do have the specific antibodies for MCTD the only thing I am missing are Polymyositis symptoms. The rheumatologist at Cleveland Clinic seemed to think I might be an early stage of Sclero because of what my capillaroscopy looked like and that I have gastroparesis on top of the GERD.When I questioned him that I didn't have any Sclero specific antibodies he said you didn't need sclero specific antibodies to be diagnosed with Sclero. From my research actually the only CTD that has a specific antibody required as part of it's criteria is MCTD. But of course who knows -- His final answer was -- It is what it is.

My general practitioner is young and does not seem very bright but I am happy that he seems fine to let me research and is willing to send me to any specialists when I ask. My GI doctor did get frustrated with me when I asked for a repeat biopsy for Celiac and told her (very nicely of course) that she didn't take enough samples last time. I have a son with Celiac and wanted to be sure that wasn't playing into all my GI symptoms. But most of the time she is really good about checking for things I ask. She actually has been the biggest help with trying to figure out my chest pain. She was willing to check for pancreatitis and gallstones at my request even though she didn't think my symptoms matched and she's the one to refer me to a Cardiologist just to rule that out.

My hematologist was actually fascinated for me to explain to him what a nailfold capillaroscopy was and we took half of my appoinment for me to teach him about it. I thought that was neat-- a doctor actually interested in what I had to inform him about!

My rheumatologist has not done any PFT's, ECHO's or even referred me to a Opthamologist since I've begun Plaquenil. But I will be asking for those at my next visit (well the ECHO I won't need since I just had it last week). I do like my rheumatologist even though I don't think he is thorough enough; I need to reserve judgement though because I've still only seen him twice. I just think they are way too busy -- I always see the Nurse Practitioner but she always goes down and counsels with him and even has brought him in to see me with her when she was unsure. Then when he was unsure he sent me for second opinion at Cleveland Clinic, so I like that he's willing to say when he just doesn't know.

Well I hope you find a rheumatologist that you can work with and that will order the right tests. We'll see how my rheumatologist responds when I ask about PFT's next visit. I hope you have a great day and nice meeting you!

#10 Bleev

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Posted 25 February 2012 - 12:37 PM

Hi Climber, I also have MCTD. I was originally diagnosed with lupus many years ago and now the sclero is fully presenting itself. Looking back, I can see that the sclero was mildly emerging through the years with the lupus. I have markers for RA and the myositis, but no symptoms for those showing (thankfully--not wanting any additional :) ). I learned of the sclero last fall when pulmonary fibrosis was found. Glad to read that you are getting lots of thorough testing.

#11 miocean

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Posted 25 February 2012 - 11:03 PM

Oh no, Climber, am I going to lose my lead in having the most "ologists?"

See the thread in the Fun and Friendship for All forum.

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#12 Climber

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Posted 26 February 2012 - 04:47 PM

Oh no, Miocean, I would never take anyone's trophy. I read the thread; I never noticed that part of the forum, thanks for pointing it out. You all seem to have so much fun on here despite the suffering. What an encouragement!
I was never thinking I'd win any records on here for 'ologists' as I know you all deal with so much, it's just so shocking for me. I actually went 20 years without a general practitioner never took a medicine except a vitamin. I was one of those health enthusiasts who did everything natural and didn't need doctors, going from that to finally finding a general practitioner and adding a Rheumatologist, Gastroenterologist, Hematologist, Neurologist and now a Cardiologist (Find out this week if I'll need him anymore), and adding medicines like candy all in one year is just sort of shocking to the system. I tried all the natural remedies I knew and finally decided I needed help.

Thanks for showing me the Fun and Friendship forum and I hope all your 'ologists' are able to help you. Please by all means keep your trophy!!! You deserve it from what I have been reading on here!!! I'm new but I've been reading and am inspired by your courage through all you've been through. I feel silly complaining about any of my minor troubles which pale in comparison. Thanks for being an inspiration!

Climber

#13 Climber

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Posted 27 February 2012 - 09:17 AM

I want to thank everyone for their welcomes.

Joelf, it is so neat to find someone who understands my fascination with studying these medical topics. My friends and family think me quite strange. Some have suggested I go back to school and become a doctor(at age 45-- I don't think so). They think it's crazy how much I know about my disease and the medical jargon I've learned. They are all content to trust their doctor's implicitly and don't really want to know much; for some it scares them too much. I try to explain that it isn't that I don't trust my doctors it's that doctors are too busy and can't possibly be up to date on all rare diseases and conditions, no matter how caring they are. I feel with a chronic disease it's pretty much mandatory to understand what is going on in your body and I can thank all of you for I have learned that on this site. But for me, it is even more than that -- strangely I actually enjoy studying this and Joelf it is wonderful to have found a kindred spirit and to know I'm not the only strange one.

Thank you all so much for all the enjoyment you have given me with the wealth of info on this site and all the wisdom you share on the forum-- Climber

#14 Joelf

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Posted 27 February 2012 - 11:55 AM

Indeed, Climber; I find this disease absolutely fascinating and agree that it's far better to have lots of information and knowledge about it and then be able to understand the rheumatologists and consultants when I have my appointments. (I'm always trying to tell my long suffering general practitioner how to do her job! :lol:) I'm sure my consultants consider me a bit touched and tend to humour me anyway!! ;) :lol:

Since being involved with ISN, I've learnt so much about Scleroderma (I always make a point of reading and trying to understand the news items I post even if some of them are a bit over my head! ;)) and it's done my idle brain a lot of good to be worked after years of idleness!

Best wishes,

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#15 Amanda Thorpe

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Posted 27 February 2012 - 01:18 PM

Hello Climber

I find it such good therapy to spend many hours googling the content of letters from the hospital, test results etc. Unfortunately it isn't always a pleasant discovery but I'd rather know and actually the doctor should have told me. I read in one letter of the possibility of myocardial fibrosis so went a'googling, one reputable site explained it could be treated another said it was terminal! As a seasoned googler I knew which information to discount but you do wonder how many people don't.

Take care.
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#16 Jalee85

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Posted 03 March 2012 - 08:36 PM

I was diagnosed with UCTD early onset lupus with sclerodermic symptoms I was told that I have the scleroderma pattern on the nail fold as well, but I guess that doesn't mean much. I've recently looked at my own and posted pictures of it I thought it was kinda interesting anyways..lol

Jalee