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.

Langold | @rarelybees2889 | Feb 20, 2023

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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Hi
I have Sjogren's too, its now called "Sjogren's Disease"
For information, there is a foundation. Here is the link: https://sjogrens.org/
Hope that helps.
Good luck!

margar1 | @margar1 | Feb 21, 2023

Hi, I too have MCTD. As well as post-Covid syndrome. And Raynauds. It’s a lot to take in. I was told to maximize nutrition (no processed foods), eat the Mediterranean diet, get lots of sleep, paced exercise (gradual), and moderation in everything I do. Like no multitasking. Take breaks often. It’s hard to get out of bed sometimes, but you have to do a little bit on those days. If you have a great day with lots of energy, don’t do too much or all the things because you’ll be tired for the next two. Moderation is key. Hope that helps. I’m here if you need to talk.

Langold | @rarelybees2889 | Feb 23, 2023

I understand what you are all going through, I know its not easy... There are some good suggestions here...It helps to know you are not alone in this!

jholland | @jholland | Feb 23, 2023

Impossible to KISS or Keep It Simple Stupid!!
EDS is my demon and has granted me pain after four hip replacements. Shoulders feel like railroad spikes. Replace the the surgeons say but you may not be able to dress yourself after. Oh! I care for three horses (ride a bit. Used to breed, train) have as dog and three cats. A widow. 3do am the only human(?). Life is difficult on pain pills and shots but was worse without them. Electric implants for pain were suggested. Insurance disagreed. Oh well! Heigh ho heigh ho ……..

jesa | @jesa | Feb 23, 2023

In reply to @jholland "Impossible to KISS or Keep It Simple Stupid!! EDS is my demon and has granted me..." + (show)

I have EDS too. Not as badly as you. What anti-inflammatories are you using? I find that if well-sourced, cucurmin, moringa, and high doses of DHA help a great deal with the pain. Transdermal ultrasound vagus nerve stimulation is also a neurological winner. I am also looking into photobiomodulation, which is coming of age: See the division at Mass General Hospital doing this based on significant research by Hamblin. I do not want to be a slave of opiates if I can help it,

jholland | @jholland | Feb 23, 2023

In reply to @jesa "I have EDS too. Not as badly as you. What anti-inflammatories are you using? I find..." + (show)

Slave to opiates or technology, still a slave. Which allows the greater choice to reset freedom, they both restrict and constrict freedom of motion or slow it down to minimal accomplishment.

adlttl123 | @adlttl123 | Feb 24, 2023

Welcome. We have a very nice group of people here. Always ready to share info and anything that we have learned along the way. At one point I was diagnosed with MCTD but have RA Sjogrens and Lupus. I have been on a long list of medications and have had some relief from all of them some of them are enbrel..Orencia methotrexate..all the pills by mouth..and now I’m on Xeljanz for the last almost 5 years. It has been good to me but is wearing off so doc is changing me to RINVOQ. What have I learned: as has already been said: moderation in all things. The days of...forgive me please “balls to the wall” are over forever for me. Unless I enjoy suffering. I don’t. Make the most of good days. But do not over do or in the bed you go. Make a list of priorities. In your case do you want to work or show dogs. I know who wants to make choices??? Anyway that’s just a few tidbits from me I’m here for anything that you need or just to talk. Prayers and please stay close. Diane.

kimegraves | @kimegraves | Feb 24, 2023

@ellashab
I am sorry that you are going through this! First I want to thank you for being a police officer and keeping us safe, I know it is a very hard and difficult job in this day and age!
I have been diagnosed with undifferentiated connective tissue disease and CIDP, and I understand
not having energy and having difficulty dealing with this. I would recommend that you continue to exercise, eat healthy, and not over do. Two years ago I was very active and had a very stressful career as a nurse anesthetist and I quickly realized I would not be able to continue at the pace I needed to be at for my career. I retired and still have a difficult time keeping up with all the activities that I need to do. It took me awhile but I have learned that I have to slow down and do what I can do, if I need to take at easy one I do! I hope you soon feel better, please keep in touch with the group.
Kim

starbright | @starbright | May 23, 2023

Diagnosed with MCTD a month ago. Started getting progressively sick both mentally and physically when I contracted Covid in June 2021. Sound familiar to anyone else?

covidstinks2023 | @covidstinks2023 | May 23, 2023

In reply to @starbright "Diagnosed with MCTD a month ago. Started getting progressively sick both mentally and physically when I..." + (show)

I'm so sorry you are having to deal with this. I had a rough case of Covid last year. It ramped up the inflammation I already had in my body. I am very tuned into my body and I knew there was something different & new going on with me after COVID. I just got a diagnosis of borderline Lupus and I am being treated with Plaquenil and it is helping. I am convinced that Covid brought this on as I never had it before. Also, still battling hypersalivation since Covid. Covid does a lot of crazy things to folks...even if they only have a mild case. Some folks, get over it in a few weeks and are fine....I was not one of those people. Do I believe it could have brought on the MCTD in you...... I certainly do. It is a brutal virus. I think it will take years for the medical field & much research to fully understand what all COVID has done. I hope you get relief soon. Again, I am so sorry you are battlng this. Blessings & Hugs....

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