MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story....4 Weeks ago I was diagnosed with Mixed Connective Tissue disease...I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I'm married...so I have a lot going on and this has pretty much put a stop on everything...I'm on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day...Some days I'm fine and other days I can't get out of bed either because I'm so tired or I'm having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I'm losing my mind and body for that matter.....Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me....HELP

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

clare | @clarecmt2 | Feb 8, 2022

In reply to @snowaries "Your case is interesting. I started having severe dizzy spells, heat flashes mixed with chills, skin..." + (show)

@snowaries

Your case is interesting. I started having severe dizzy spells, heat flashes mixed with chills, skin break outs, extreme fatique. At first, I thought I was going through early menopause based on the symptoms. When I don't feel well, I am out for the count, literally no energy.

I have several drs running several tests which all come back as normal. Then one test showed positive for Shogrens (not sure of the spelling). Saw a rheumatologist and he said I scored positive but too low for shogrens. He did a saliva test and blood work again and it came back as normal this time. I can also take allegra which relieves the symptoms so according to the rheumatologist, no shogrens.

My allergy dr thinks I may have hives. I took 2 more tubes of blood and now he thinks it may be Mixed connective tissue syndrome. I am fatigue, dizzy, etc but the other symptoms I really don't have.

I was sent to an ENF which after several balancing tests and a brain scan said I have a 23% loss in my inner ear on the left side thus the source of my dizziness and balance issues. This makes sense since after I work out, I am too dizzy to move. Heck, I can be sitting and get dizzy. They have me on clonazepam to take a night and seems to be working. But, if I wake up dizzy, I have nothing to help me during the day.

This all started with severe skin break outs everytime I ate. I can take one bite of food or a sip of a beverage and my head is spinning, my skin breaks out in rash looking lines and/or spots. The only things I am safe from is water, unsweet tea, and diet soda. I tested negative for food allergies, pollen, nature, and actually only allergic to dust (after being poked several times).

I've had a nasal MRI, breathing tests, and another round of 10 tubes of blood for various tests only to be informed this past Wed that everything was normal.

I am quite frustrated as to what is going on with me. I too am very active, travel for my company weekly, in school full time, and stay busy busy. I am wondering how your MCTD was diagnosed and if your symptoms progressed over time. Do you think it came about with diet or certain foods?

I am also curious as to which foods help / hinder these symptoms. I heard various kinds of berries help as well as rice, fish, cinnamon, flex seed.. does all this really work?

Anything you can offer would be greatly helpful and appreciated as I am frustrated yet anxious to find out what is going on with me.

Thanks.

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it would be good to test the thyroid the TPO antibody to make sure you don't have Hashimoto's thyroiditis and to do an EKG to make sure the electrical system is intact

John, Volunteer Mentor | @johnbishop | Feb 8, 2022

In reply to @clarecmt2 "it would be good to test the thyroid the TPO antibody to make sure you don't..." + (show)

Welcome @clarecmt2, Thank you for sharing. It sounds like you might have some experience with Hashimoto's Thyroiditis. Do you mind sharing a little more about your diagnosis and any treatments you've had?

clare | @clarecmt2 | Feb 8, 2022

In reply to @johnbishop "Welcome @clarecmt2, Thank you for sharing. It sounds like you might have some experience with Hashimoto's..." + (show)

I just recently got the diagnosis after a thyroid test for T3,T4 & TSH
The T3 and T4 were normal but the TSH was high & climbing
prompted the test is about mid January I started getting a rash here & there on my body ... I would scratch it & it would raise up into a welt... at that point wherever you put pressure on my skin including my feet on the bottom it would become inflamed with hives and welts...ugh got an appointment ASAP ...Doctor ran auto immune tests and thyroid & Put me on prednisone 10mg
I could not tolerate that dose I cut it in half ...that got me through until I saw my primary a couple of weeks later Rand another thyroid panel and the TSH was around 8...
I was freaking out
The primary is an internist so he knew to run the TPO test to see if I had a Hashimoto's
sure enough it came back positive
I just started thyroid medication a week ago I believe the rash is getting better I have used a allegra all the way through after I stopped the prednisone
alongside the rash/hives came intermittent severe reflux
it would feel like my stomach was in my throat and I couldn't get relief from burping I have been panicked this whole time
when I told someone about my keys they said I caught it early I may have and I'm glad for that because I didn't get any of the traditional symptoms of hair loss , weight gain etc.
it is too early to tell how effective the thyroid medication will be because it takes 4-6 weeks to fully kick in
I have always had normal T3 and T4 with slightly elevated TSH
but it had gone off the charts
what is my story I am still taking Allegra and I think the intermittent rash and hives is halfway better
Do you have Hashimoto's and if so what is your story

John, Volunteer Mentor | @johnbishop | Feb 8, 2022

In reply to @clarecmt2 "I just recently got the diagnosis after a thyroid test for T3,T4 & TSH The T3..." + (show)

Hi @clarecmt2, Fortunately I don't have Hashimoto's along with my other conditions - PMR, idiopathic small fiber PN, osteopenia and degenerative disc disease along with a few other conditions. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/. There are a few other discussion on Hashimoto's that you might find helpful. The newest discussion is listed first.

-- Sjogren's, Hashimoto's and Thyroid Dysfunction: Got questions: https://connect.mayoclinic.org/discussion/sjogrenshashimoto/
-- Hashimoto's Thyroiditis in remission: https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-1/
-- Hashimoto's Thyroiditis: https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis/

clare | @clarecmt2 | Feb 9, 2022

In reply to @johnbishop "Hi @clarecmt2, Fortunately I don't have Hashimoto's along with my other conditions - PMR, idiopathic small..." + (show)

I appreciate your response & I am sorry to hear you are dealing with multiple conditions...I too have ostepoenia and degenrative discs
I will read your post you shared your story and get back to you

raepent1 | @raepent1 | Nov 5, 2022

I know this is a very dated post & also has a chain of comments, but I chose to start with the first comment in hopes that the earlier commenters were still following it.

I am 41 yrs old, multiple autoimmune dx over the past year (which I have learned that is common and they mostly all share same symptoms…don’t get me started on that whole mess). It has literally impacted every single part of my life from physical to mental to emotional and has shaken me to my core! One common theme I did notice is that ALOT are in my age range (30-55) are Type A personalities, go-go-go, likely ADHD or undiagnosed ADHD, confident, independent, strong females! So I’d love to connect with a group that fits that description because I am really struggling to find myself in this new “normal” because it’s so foreign to me. If you would like to connect - I’d love to figure out how we can start a little group of our own to be a support group for each other. Lots of symptoms, lots to share, and brain dumps on the public are just inconsiderate ;).

May the light shine a little brighter even in our darkest moments - 🤗

Becky, Volunteer Mentor | @becsbuddy | Nov 5, 2022

In reply to @raepent1 "I know this is a very dated post & also has a chain of comments, but..." + (show)

@raepent1 You’ve asked a really good question! This article from The Atlantic Magazine tries to explain it.
https://www.theatlantic.com/health/archive/2019/06/women-autoimmune-diseases-pregnancy/591901/
But I still want to know “why us, why me”? I’ll ask other members to join this discussion @2011panc. @yellowdoggirl. @gingerw @ess77 @willows . They probably have something to contribute
You know, @raepent1 , you can start a discussion on the Autoimmune Disease discussion page. On the right of the box, typed in blue, it says ‘start a discussion’. Tap that and it will take you to the right place! Just don’t limit it to the 30-55 age group. Any a quite a bit younger than you and just joining the fight and some are dealing with it at age 80+.
We’re glad you joined the group! And hopefully you can learn from members here and us from you. Will you come back and see what the others have to say?

Becky, Volunteer Mentor | @becsbuddy | Nov 5, 2022

In reply to @becsbuddy "@raepent1 You’ve asked a really good question! This article from The Atlantic Magazine tries to explain..." + (show)

@raepent1 here’s a photo of the page you want to go to:

raepent1 | @raepent1 | Nov 6, 2022

Thank you so much for the links - Not sure how to do it but feel free to move discussion or comment to a better fit if needed! And yes, I wasn’t trying to discriminate at all, I was trying to send a shout out to those “busy-body” types, because that’s what I consider myself & seems to hit us pretty hard when “busy” kicks your butt! I’ll check out the links you sent - thank you for them!

Ginger, Volunteer Mentor | @gingerw | Nov 6, 2022

In reply to @becsbuddy "@raepent1 You’ve asked a really good question! This article from The Atlantic Magazine tries to explain..." + (show)

@becsbuddy What an interesting article! I have 3 sisters. Two of us have never been pregnant, 1 had one pregnancy, 2 had 2 pregnancies. I am in the first group, no pregnancies. That said, I am the only one who has has any autoimmune issues. I usually light-heartedly tell people I must have volunteered for my issues. My good friend told me she doesn't think it is a case of volunteering!

Have I considered the "why-me-why-us" thing? Definitely! I was diagnosed with Systemic Lupus in 1988, and thankfully it is considered a fairly mild case. Other autoimmune conditions include fibromyalgia, and my ultra-rare kidney disease. I ponder the comments by @raepent1 about overachieving and attitude characteristics, which really do fit me to a "T". At age 69, now on dialysis and active chemo for an unrelated blood cancer, I take each day as it comes, deal as with it all as best I can, and remain gratefiul.
Ginger

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