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undifferentiated ctd/ MCTD / Lupusy

Discussion in 'Newly diagnosed' started by unlisted, Aug 30, 2018.

  1. unlisted

    unlisted New Member

    Temporarily Diagnosed with Undifferentiated Connective Tissue Disease but suspected MCTD

    Backstory : Most of the backstory is in the undiagnosed thread i made. But rumi asked us to come back in a week. 2nd visit was today and did not go well. First he was annoyed that prednisone was not taken for the week between the two visits. We explained to him that he was not the only specialist involved and that taking prednisone would ruin my diagnostic with other specialists. Basically he doesn't care! Argh. He just said basically he won't help us unless we take prednisone FIRST.

    He didn't care about previous bad experiences with prednisone. We explained that it only takes 10 days for the effects to last for years in previous uses. NOPE doesnt matter, and that's just not possible to have happen, you must have been on it longer or in higher doses. HELLO?! The man did not listen or respect anything said.

    Including the derm's report which was these rashes look like a response to the sun, and connective tissue related. Sigh.

    He would not review my blood test results with us AT ALL except to say, there is one antibody that is high. He didn't even tell us that HELLO the results say VERY ANNIMIC and in desperate need of treatment.

    So I am feeling a bit frustrated. :( Fortunately we grabbed an early preview copy of the test results before the appt. containing all but the DSDNA results. So going in we knew exactly where we should end up.

    Anyways this guy is holding the whole thing hostage until prednisone is taken for a week. Then if anything responds He will want to "try three months of an anti malerial drug that has serious side effects", as if there is anything wrong with saying plaquinil? This guy seems to hate anyone knowing anything. When one of us mentioned co-morbidity (as they are a clinician by profession) he got REAL aggitated.

    It seems like a nightmare being in this situation, but i don't have any options, our heath care seems to offer only 1 rumi.

    finally corner him and say and if the pred works then what will you say it is? He spoke extra quiet like he didn't want us to hear but he said Mixed Connective Tissue Disease. Which tada is what we though was automatic with such high RNP. Sigh. Then he downplayed that as if it wasn't a real disease that it could change back and forth between that to lupus and then go back to MCTD. I was just so upset with the whole visit. He said there was no point to today's appt since the 7 days of pred weren't taken. Which he did NOT say last week, he simply said it was for a swollen wrist. And that the test results would be in a week.

    The topper, we asked do we come back in a week after the pred is taken? No, come back in three months.

    razzle frazzle...... :(

    PS- forgot he got real upset that there had never been a CT taken, whatever that means, which i thought he would then order but didn't instead a pulm funct test....
    Lupusdude likes this.
  2. lazylegs

    lazylegs Moderator

    How frustrating. You need to be able to work with your doctor. I would check with your insurance company. Maybe there is a rheumy further away covered by them.

    Take care,
    Lupusdude likes this.
  3. x_claire_x

    x_claire_x Moderator

    Hiya,,,sounds as if, as suspected you have MCTD... he is right though that it can change... it either goes into one of your own particular 'mixes' of disease that is MCTD ( in my case Lupus or Schleroderma) or it can stay the same...rarely does it go into submission.

    He is wrong in suggesting the Plaq is dangerous.... our diseases are much more dangerous left untreated for a lot of patients. He is also wrong if he thinks MCTD is not a real disease.. I have the scars to prove it !!!

    He may want a Pulmonary Function test as MCTD sufferers often have a degree of lung involvement ...again I do. He may then order a CT scan to determine ? lung damage on the back of those results.... they often want to save the amount of radiation you will be exposed to when all of these symptoms are evolving.

    He does sound frustrating, but often the Rheumy's behave strangely when they are questioned or faced with a group of inquisitive people ! That said, he is not handling things at all well.

    You may want a second opinion, but it does sound as if he is on the right track...however, you have to be able to work with your Drs.

    Hope you can move forward with all of this...………...Claire
    wolf1 and Lupusdude like this.
  4. unlisted

    unlisted New Member

    That's for the support everyone. Our PCP really supported us today and said we need to tell her what they can do to help (in a really friendly and supportive way). And she then offered a new rheumy :) Its nerve racking having to go through meeting another dr. and trying to stand up for ourselves but the primary really had our back. She reaffirmed that we did right by not taking the pred as it would interfear with the other tests. Then they are also sending in for a CT scan of throat for the choking and swallowing problems and she decided to do a ct of the lungs at the same time since had problems for so long. (I hope these aren't just because i told them the first rheumi was shocked never had a ct before)

    I'm not really sure what would show up on these tests but at least have a dr who is vested in finding out what is going on. Though i am a bit scared of the radiation involved. It was to hard to get a Ultrasound of the thryroid while it was swollen so i'm not sure if that will also be looked at on the ct. Nervous but hoping this will be helpful and not harmful.

    Oh and we picked up a full copy of test results today as well with the missing double strand test, which was positive, and had a note saying he would send us in for another test when we came back/ when we did he never mentioned it and failed to send us for the additional test, and told us over and over the tests were all negative except for the MCTD antibody. Feeling kind of glad that we fired him, but frustrated and scared too.
  5. lazylegs

    lazylegs Moderator

    Has anyone gone down with the endoscope to see if there are any problems in the esophagus? The scan showed I had a goiter on the thyroid but the endoscopy and swallowing testing showed I also had grown a web in the esophagus which was blocking the passage of some foods.

    Good luck with your CT.

    Take care,
    Lupusdude likes this.
  6. unlisted

    unlisted New Member

    Thanks lazy legs, would the ct show those things as well? Years ago someone put scoped nose through to the larynex but that was it. No one has looked down the esophagus but been on Nexium for about 8 years just the same for reflux. Actually expected the scope to be next but they called for CT w/ contrast instead. Can a CT pick up everything a scope would as well?
    Lupusdude likes this.
  7. lazylegs

    lazylegs Moderator

    The CT can give a better look at any nodules or goiters. I don't think it can be used for the swallowing tests checking on the function of the esophagus.
  8. unlisted

    unlisted New Member

    Thanks for the info!

    Hmm well the swollen neck feeling must be part of what they are checking on then. Would the CT also show anything amiss on the thyroid? How about the Lung CT any ideas on what things could show up on that type of test. I'm so worried about the radiation exposure and whether or not the tests are needed. But at least its not the darn MRI machine that thing is way to closterphobic, but at least its not radioactive sigh.

    Theres been some swelling in the neck area making it hard to move the neck down left right etc when its swollen. Then it goes away for awhile. Also periods of difficulty swallowing and a choaking feeling as well as a feeling of breathing a little liqued. Dr doesn't thing that its the thyroid pushing on the esophagus though originally she did think it could be that. That's the background on the Neck CT and since the fired rheumi had mentioned it being odd i hadn't had a pulm ct i think she was thinking maybe it would be good to have that done as well while getting the neck CT'd.

    Just wish i better understood the usefullness of these tests in finding causes. I just want to make sure that there is a chance of them being helpful before getting so much zapping. :confused::confused::eek::oops:
  9. lazylegs

    lazylegs Moderator

    Only you can decide if you want to follow through with the test or not. The scan was beneficial for me as they found a large goiter that needed to be removed. Without the scan the doctor couldn't tell by feel alone exactly what it was.
  10. sagehen

    sagehen Junior Member

    There are so many issues with this particular Rheumatologist. I suggest you move on to another, if possible. It was my experience in finally getting a diagnosis , that I saw three other Rheumys, before seeing the one that gave me a diagnosis. They didn't want to give me a diagnosis. Unfortunately, many doctors are like this these days. I believe they are discouraged from putting a name to our illness, because of our government. This is only my own opinion. I believe, they have been told to treat us, but to avoid naming our illnesses. Mostly, because they do not want so many of us trying to get on disability, which cost's our country untold amounts of big monies.

    It took me over 15 years, but I finally managed to find a good honest Rheumy that was willing to diagnose my conditions. When I explained what I had been through with the other Rheumatologists, he became very angry. I had the worst experiences with female doctors, oddly. They were the least compassionate. My regular M.D. now, is a female and just the opposite, so I know there are some very good, kind, and compassionate female doctors out there.

    I would suggest that you find another doctor, this doctor obviously feels insecure, if he is threatened by your knowledge of clinical terms, and medical knowledge. I had that experience also. Someone even suggested to me that I play "dumb." in order to not offend this doctors fragile ego. Sorry! That is just not me. I am me, and will not play games or dummy down to make an insecure doctor feel like he is more intelligent.

    Once you find a good self assured knowledgeable specialist, I believe you will have greater success in getting proper treatment.
    Please do not fear taking Plaquenil. Most of us that take it, have very good experiences with the drug. You just need to make sure that you have your yearly eye exams. Plaquenil, is actually the best drug to take for our diseases, because it not only helps with symptoms, but it also slows down the disease process. It helps reduce our risk of heart disease, of which we are at much greater risk of developing,( over 50% greater risk.) Plaquenil, is really one of the safest, and most effective medications any of us with Rheumatic disease can take. I promise! I have taken it for over 20 years with absolutely no problems at all from it. It's only drawback is that it takes quite a long time to work in our bodies. Sometimes up to six months. It can take three months for some people. It is different for each person.

    Some doctors will prescribe several months of low dose Prednisone to get a patient by until the Plaquenil has time to do it's work in the body. This alleviates much suffering in a patient. It just depends on the doctor, and how conservative he or she is, as far as prescribing Prednisone.

    As long as you take the Plaquenil as it is prescribed, and get your yearly eye exams, you should do fine. Most of use take 200mgs twice daily with food. Just keep in mind the side effects of the medication, and know that chances are, you will have one or two, but the end result of the drug helping you, far outweighs the negative side effects, most of the time for most of us that rely on it.

    I live in the Boise, Idaho area. We have a few really good Rheumatologist here in this area. In case you live somewhere around here..

    Best Wishes!
  11. sagehen

    sagehen Junior Member

    Forgot to tell you, you will most certainly be exposed to the need for many diagnostic tests, since you have some form of connective tissue disease.
    It is part and parce,l of having such a disease. Lupus is called the "disease with a thousand faces." If you have mixed connective
    disease, tests will be needed to figure out which ones plaque, you and where, and how best to treat them.

    Most of us have had several c.a.t. scans, and many m.r.I's, and many more of us have had lumbar punctures. I know I have.
    I have a mind set that helps me greatly with dealing with these diseases, and needed tests. I know it sounds common, but try to
    take only one day, and problem at a time. I had to learn this over time. I realized, I would become overwhelmed if I tried to borrow concerns from the future. In coping with these diseases, it helps so much, if we just get through one day at a time. It will
    take some practice, but once you surrender to this thinking approach to your conditions and its many tests, you will cope much
    better, and worry much less. I promise.

    Also, this site and all its wonderfully compassionate members have always been ready to step up to answer questions, and to help you
    resolve any concerns you may have. Feel free to ask any question you feel you would like feed back about.

    In the case of m.r.i's and c.a.t. scans most of the time, the technician will readily accommodate you with a anti anxiety medication to help you relax in the inclosed machines. Most hospitals are leaning toward open c.a.t. scan machines now, thankfully.
    All you need to do is.. tell the attending tech, that you suffer with anxiety or claustrophobia.

    Again, best wishes to you!
  12. unlisted

    unlisted New Member

    sagehen, thanks so much for your reply. Feeling alot better about everything now, we have been given a referal to a new rheumatologist - though waiting until after the tests to set up an appointment so they have everything to work from. Depending on how long it takes to schedule the ct's. (It's hard to remember everything we need to schedule when you have to wait 2 weeks everytime for approval which you plan swears up and down you don't need to do.)

    Is the "Open cat" machine different than the donut one? THanks for all the tips!

    It's reassuring hearing so many people use this medication successfully. Sounds like the 3 month run of it would have been a bit short to see if it was working.

    Thanks for the feedback everyone I feel alot better about us having fired the old dr. :)
    sagehen likes this.
  13. Michael Garhart

    Michael Garhart New Member

    It's not legal for him to keep the information from you. Request the full paper for it from the front office. You can even take the result to another specialist, if you so please. If they use a mychart system, find it and log into it so you can print anything off for the future.
  14. unlisted

    unlisted New Member

    Thank you all for your help. Checking back in with updates. We got a referal to a different (well reviewed) rheumi and an appt. 3 months later. About a little over a week before we got a call, he quit and moved out of state. :speechless::mad: Then we got a call from the office telling us and asking who would we like to see instead ?:eek:(keeping in mind the appt. i had with the one who quit was 3-4 months wait prior). Seriously?!

    I have to hope that this turns out for the best. Took my time and went back over the other MD's and a DO they had remaining at the office. The reviews of the MD's were:sick: so we will give the D.O. a try. They at least on their website gave Lupus as something they were interested in, which is at least hopeful. Feeling a mix of optimism and dread over the appt. which is tomorrow.

    Trying today to remember everything needed to be ready for the appt. It's been 5 months since we saw the first rheumi and it feels like forever ago. Hope-ing can remember or figure out what to say and ask. They should have access to the bad DR's results and notes. but we have no idea what his notes say. at least i do know what the test results were. we did end up getting the CT's and it was SOO much easier than i was afraid it would be. Totally nothing like the MRI. Could see out the whole time, which was such a relief. Plus they had this where's waldo type thing on the ceiling which totally was distracting and it was super easy, never felt a thing from the contrast either. So grateful.

    Any tips for our meeting with the new Rheumi
  15. x_claire_x

    x_claire_x Moderator

    Write down a list of bullet points, noting the symptoms that are the worst for you first and how they impact your everyday life. take any photos with you.
    Write a brief summary of history of illness prior to this appointment.
    Don't wear any make up or nail varnish to the appointment.
    Be brutally honest about things and don't be brave and make things out to be better than they are ( a common trait !),

    Take somebody with you to hear what they say, and also who knows you well so can contradict you if you make things sound ok ...Lol .

    Good luck...let us know how you get on :0)……...Claire
  16. Jessica1

    Jessica1 Moderator

    Hello unlisted,
    Claire has given you really sound advice and I can't add to that, it's all about being organised and prepared to get the most out of your appointment.

    There's a page on the main site that I also found really helpful which you can find here


    I hope you get on ok and let us know how it goes.
    Take care,
  17. unlisted

    unlisted New Member

    Thanks for the tips, wish i had seen them before we went :oops: my bad. Got pretty nervous at the appt. and my head was so foggy it was hard to remember everything. But i did remember to bring someone else along who could help and give honest answers too.

    One troubling part was where this new D.O. said that sensitivity to smells wasn't lupus/mctd symptomatic. And that they thought it was asthma, even though the other dr had ordered pulm funct. testing which showed restrictive lung disease not obstructive. She stated no one has those symptoms with lupus or mixed conn tissue disease. Which i don't think is true.

    Regardless she seemed unwilling to believe would be diagnosed with anything, while saying she was uncomfortable labeling me and saying she was uncomfortable ruling anything out :confused:. #confusing

    She did listen which was nice, but we are uncertain of her compatency after the lung comment. Since the former dr was VERY concerned about the lung problem being related. Anyways she wanted to run more tests, so back to the lab, and she ordered more hand x-rays which had many in the past, all neg. And she wanted to do a scan of hands but said she had run out of time.

    She tried to pass off the malar as rociassia, even with the dermatologist on record with saying that is was not. Rheumi wants biopsys done of any pink areas on arms, including a "Chicken flesh" area, which again the dermy said was absolutely something else. So the rheumi seems to have ruled out anything the derm said, including the items that dermi observed that were according to dermi connective tissue related. Plus now afraid of scars from all the biopsys she wants of areas that don't even look that pink or red to me....

    Frustrated but tried to keep on keeping on. She did say have the MCTD antibodies and that at minimum would have to be watched to see if get that disease but thought having them meant already have it, which is what the first dr said. This new one seems focused on trying to dx with RA which i'm guessing is more lucrative in the pharma dept. Since they always x-ray for that everywhere i go. But after having extensive CT's a couple months ago i would think that would have shown up then.

    Anyways feel like i totally stumbled through the appt. Couldn't find the right rash photos on my phone and was trying to give disease history but my brain just wouldn't pull it all together the way i wanted. I'm 50% fretting that i mucked up the appt. and 50% worried that she's not compitent enough to help. And i have no idea if either are true. Don't mind me just having a little meltdown :cry::(:oops:

    So I don't know, she doesn't feel comfortable with my dx but says she's also not ruling out mctd and or lupus. Just more confusion. She did look at my nail beds on my hands though looking for signs of Rayneids which no one had done, so that was at least feeling like someone was taking me seriously. She didn't find any evidence though.

    I wish i had felt better prepared but this gal had access to all of our prior records so i wasn't as concerned as i guess we needed to be about remembering everything.
    Here's the tests she ordered that we are waiting for results on:
    • Aldolase -----New
    • Aniphospholipid syndrom
    • bnp - b type ----New
    • CRP
    • Creatine Kinase
    • Cyclic Citrullinated
    • DNA (DS) Crithidia ---- New
    • Lupus 12 ----- A couple New some repeats
    • Myositis Assessr Plus JO-1 -------------New
    • RNA Poly 3 -------New
    Plus all the normal stuff & Xray Bilateral Hand Comp

    Prior results were DS DNA Positive, RNP High Positive, ANA positive Homogenous and some other odds and ends
  18. Jessica1

    Jessica1 Moderator

    Hello again unlisted,

    I feel your frustration, it's hard when you feel you've got to prove everything and make sure you've covered the lot in one consultation. The positive DS DNA positive should help towards a diagnosis and it's good that they've ordered biopsies.

    I had a biopsy on my face about 18 years ago and it was the smallest incision at the side of my nose...not necessarily even where the marks on my face had been. I can't even see the scar from the biopsy, all I noticed over the years was that if I pulled my skin really tightly I could just about see it. It was more upsetting to see that it was lower down after gravity and nature had got hold of it over the years:roflmao:

    From my experience of being tested for photosensitivity, I was told that things show up on your skin anywhere because it's one big organ so that makes sense if I was diagnosed initially with Discoid Lupus from the biopsy taken away from the lesions.

    I would suggest that you wait and see what all the tests bring and if you're not happy you could ask for a second opinion.

    Sorry if I've rambled, I'm using my phone so it's not so easy to see all that I've written!
    Best wishes,
  19. lazylegs

    lazylegs Moderator

    By chicken flesh the doctor may mean Keratosis pillars. The pimple like spots can look like a Lupus rash I get if I am out in the sun. A biopsy would determine the cause.

    Good luck with all your tests.

    Take care,
  20. unlisted

    unlisted New Member

    Yes i think that is exactly what chicken flesh was, its just hard when the derm says not lupus, and the rheumi says check it. Pretty sure thats what the derm called it last visit.

    Thanks Jess, maybe its not as bad as i am fearing. Really appreciate the encouragement. Its nice to have this place to come air out our fears and get advice from folks who have already been down these roads.

    Should i go out and get sun exposure prior to the derm appt. do you think? To see if i can maybe bring out some rash, i dont know....

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