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Being diagnosed with MCTD, I am hoping to find others to give me their experiences. I scare myself with so much information on here-- hubby tells me to quit googling things! I can't say as I blame him really. I mainly suffer from joint and muscle pain, but recently I have these feeling where it seems my head is "crawling" .... (hoping that makes sense). My doc seems very unconcerned and hasn't sent me for any other testing ( heart, nerves, etc) since my last set of lab work came back good (except RNP, SM, RNP/SM, CENTROMERE, ANA, all came back positive). I also have hypothyroidism and am currently waiting on a nuclear scan for that. I did have an episode where I was at work in a warm room and became very hot myself, shaky, and dizzy thought I was going to pass out but it passed after about an hour.
I would love to hear that others are doing just fine with MCTD, but in all honesty, I just want to know what to expect. I have always been a worrier- big time, but others have come to know that is just me. I am trying to not let this affect e too much, but it is so hard to do when no one I know is going through anything like this.
 

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Hello again,

I have moved your thread here to living with lupus even if it is "living with MCTD" in your case.

MCTD is very similar to lupus in many ways, notably its unpredictability, so knowing what to expect isn't going to be easy but many people have no harder a time with MCTD than with lupus.

Its treatment is largely the same as are many of the symptoms depending on which degree you may have other symptoms of polymyositis or scleroderma (the "usual" overlaps) with lupus. An MCTD diagnosis can also be given with a different mix of overlaps.

We have a few members here with an MCTD diagnosis. I myself have the lupus and polymyositis parts (and also have hashimotos like you). In addition to my standard lupus treatment I also get physio to help with muscle strength from polymyositis. It's really a case of working with your doc as you go along and adjusting as needed.

:hug:
Katharine
 

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Hi Superloopie,

I was diagnosed with MCTD a couple of months ago. I went from Lupus to now MCTD... I don't think there is anything to be scared of regarding the disease. I think most of my fears lie with the fact that along with my MCTD, I also have ITP (low platelets) so when that flares, I have to worry about being extra careful to not fall or bump my head (I could bleed out because my blood has trouble clotting when my platelets are low). Other than that, I live a normal life, I got to the gym and am very active with my son. I just eat right, get plenty of rest etc. your husband is right... stop googling so much.

As far as some of my symptoms, I have the joint and hip pain (going to the gym helps to releive some of the pain), headaches, fatigue, IBS, Rayanuds (has gotten worse through the years and I live in one of the warmest parts of the US), low platelets, digital ulcers on my fingertips, I'm sure the list is longer,,, but I have a little brain fog too...

I am on Plaquenil and Prednisone currently... we tried Rituxan because of my platelet issues, but it was unsuccessful, had an adverse reaction.

I just try to keep a positive attitude with EVERYTHING I do. I feel like life is already short enough, so I am not going to spend my time freaking out about the unknown :). So if you ever have any questions please feel free to message me.

I guess I have talked your ear off... but trust me, I am here if you need me along with the others on this site...

Praying that you are having a pain free day!!!
 

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Hiya... I have MCTD, diagnosed last Nov,... still learning about this disease and my body, still get moments of panic, especially when I google...and moments of frustration and anger that I got a disease like this after years of endo pain and finally had a massive op last year to be pain free then bam:mad:.. however, I could have alot worse and it has made me reassess my life.. the pace of my life, my family and perhaps looking out for myself a bit more which has been a very positive thing. My husband has been fab.. (we celebrate our 25th tomorrow!!) I too look at things very positively, I do get tired but not crippling fatigue.. just have to pace myself and book in one event at a time and then a day of pottering etc etc.. we are all different and this disease affects us differently, no internet site can tell you how you will react, or develop etc.. that is individual..so learn about yourself.. STOP googling!!! at least for a while and listen to your body alot. My family have become a very nagging one too... really annoying, but very loving!! take your time and one step at a time is enough for now.. all the best and lots of hugs.
Claire XX
 

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Hi, I don't have MCTD, but I do have lupus and Ra, and Aps. It is a lot to get your head around to start with. Maybe you could talk to your doctor about your anxiety?

I have found I have learned to pace myself and really appreciate things in my life, since my diagnosis. So good things do come out of our diagnosis, also I found this site and for me it has been a lifeline. To chat with others going through similar has helped. I always try to be positive and upbeat, as it is bad enough being ill without adding misery!!!! :)

Also I take one day at at a time and don't worry about what might happen, it might not!!! :lol:

I find I cannot tolerate the heat anymore and always have to plan so I do not get hot, loose clothing etc.

Join us in chat sometime.

Take care

Deb
 

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Hi

I also have MCTD. I have a mixture of lupus, ?scleroderma, dermatomyocytis and psoriatic arthritis. I find my biggest problems are fatigue, joint and muscle pain. I find pacing myself helps. If I can't do everything I want to do in one day, I don't worry about it, there is always another day. I also go swimming and to the gym when I am able and I work part time. At the momment I am taking prednisalone and azathiprine. Because things have flared recently and I'm taking quite alot of prednisalone my rheumy is keen to also start me on plaquenil to try and reduce the amount of prednisalone I am taking. The thing I find worse about having MCTD is the unpredictability of it. I have times when I flare and feel really unwell, but when things settle down again I can go for ages feeling really well.
 

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OMG... Nemo that is so true... that is a good way of putting it... it is VERY unpredictable.... one minute I will be fine, the next I can barely move... its weird.. and the pain is sooo AWFUL... I am having problems with my knee... if I have it bent too long in a sitting position, it pops when I try to straighten it... and its so painful. Sometimes it happens sometimes it doesn't. So I am always on high alert...:)
 

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hello

I too have MCTD :eek::eek::eek:I just take a day at a time. Try not to overdo things when you r feeling well. Rest when you have to, in the past I have slept all day this did worry me. Thought it could become a bad habit. It passes its just listen to your body Once meds r sorted the right combination you should feel much better

take care

dixy
 

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Hi

I completely agree about not overdoing things when you are well. I have had times when I have been feeling really well and tried to do far too much and have induced a flare by doing that, so I now pace myself even when I am well. I also agree about the sleeping. If energy levels are really low and you need to sleep, then sleep for however long you need. It really is important to listen to your body and if you need to sleep then sleep.
 

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Discussion Starter · #15 ·
Thank you all so much for your replies! I feel a lot better having read- and having had a chat- with some of you. I am truly thankful I have found this site. ((((HUGS)))
Angie
 
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