MCTD (Mixed Connective Tissue Disease)

I am so thankful to find this group and appreciate all of the sories, it is helping to read about these challenges we are facing.
I am a 52 yr old woman, healthy lifestyle and eating and after years and years of seeing doctors who diagnosed me with Ankylosing Spondilosis, Arthritis, tendonitis, carpel tunnel, COPD (and I dont smoke), cronic migrains, optical migrains, Hashimotos and Celiac disease, I finnaly was referred to a great rhumatologist who gave me the appropriate tests. She said I have MCTD, Lupus, RA and of course Celiac and Hashimotos, this all makes sense now after being so sick for yrs, I also have cronic GI issues. I was often passed off because of my athleticism and my career as a welder/sculptor.
I have always been a super athletic outdoors person and a proffesional sculptor and gardner. The worst most depressing thing is, I am at the height of my career as a public artist with many great projects under my belt and I feel as if I am at my peak of creativity with so many opportunities coming my way but I find the work of welding so debilitating, I can only work maybe 2 hrs every other day lest I have a major flare-up. Im super depressed that I will have to give up the work I have dedicated my life to, even now I am struggling to complete a project for a beautiful Library.
The other part is Family, My husband, the love of my life has finally gone into remission from metastatic prostate cancer and melanoma, so now he has to see me this way in pain and suffering all the time, not being the happy vivacous me. I lost both parents last year and sadly My mother had a similar autoimmune disease, on a feeding tube for 4 years and finnaly passed due to complications at 78. I am absolutly terrified Im going down that same path. I feel as if Iʻm in a vortex and I canʻt really talk to my husband as he will get too depressed and my stepsons are doing their own things and busy with their life.
I find myself just going and laying down in bed at like 6pm...I feel exausted in pain all the time, I have always been the caregiver and now I struggle to be that person, I feel trapped by this disease.
My husband was cured by an experimental medication during a trial at UCLA, I am hoping there is more research into this condition and will be on the lookout for study trials.

@jessiek Welcome to Mayo Clinic Connect. I am so sorry for your diagnosis and your families’ difficulty with the diagnosis. I, too, was shocked when I got an autoimmune diagnosis and how it meant an end to so many things in my life. My sisters and my husband are the only ones who understand. (My sisters have autoimmune disorders of their own,). I know you will find encouragement and support here.
How long ago were you diagnosed with MCTD ? I can only imagine how hard it must be for you to take ‘time out’ from your work as a welder/sculptor. I purposely wrote ‘time out’ because you can and will get back to it in some form. I was so depressed when I couldn’t quilt anymore. And I had been an excellent quilter. I have slowly worked at getting back into quilting because it means so much to me and I know it will help my mood.
Do you have good doctors that you trust? Make sure your main doctor knows all that is going on with you. She can probably recommend a good therapist for you (an excellent idea). And make sure your primary doctor knows how much pain you are having. You need to be working with these diseases, not trying to manage pain.
What do you think is an important thing you can do for yourself this week?

Becky,
Thank you so much for the reply and encouragement !! I was just diagnosed a week ago but have been suffering with all over severe arthritis pain, headaches and breathing problems for years, along with severe numbness in both hands and arms. its the GI symptoms, along with chest pain and nausea, dizziness that really started to scare me about a year ago. I have had celiac since very young.
You are fortunate to have family that is so supportive, I hope your sisters find good treatments for their autoimmune disorders.
Im glad to hear you are back to your quilting, my grandma used to quilt and I loved it as a child.
For now I have been trying to figure out a manageable work load, I did 3 hrs of welding today, 2 hours of gardening and 2 hours of house work and now I am exhausted so will hit the sack early again. But I have to make a decision on on a big public art commission opportunity, I would never want to pass up a job but I am scared how I will be doing in 8 months when I have to start building it. I will talk to my doctors about it, and on that note, my primary is just O.K. she had to google several of the blood tests I had done at my RA and the new Rhumatologist is so busy, I am luck to get a note to her let alone a response.
This week I am going to try to get back into my Qigong practice, I do a 25 min routine on the computer, it really helps with the nerves and tendons.

@jessiek Have you ever heard of The Spoon Theory? Many people follow the suggestions given in the article. It’s all about managing your energy so you’re not too tired all the time. I usually do several tasks and lie down for a 15 minute break. That’s usually all it takes (I tell myself).
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
You did 7 hours of work today which is too much! Maybe you could hire a housekeeper to help!
After reading the Spoon Theory and what other members say, what do you think you could do to lessen or pace your day better?

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.

Hi,
New to this site, but my Mom has been encouraging me to contact the Mayo Clinic to help me regain my quality of life. In 2008 I was diagnosed with cervical stenosis. I was told it was severe and needed surgery ASAP. I was working for a great hospital at the time, was recommended the best neurological practice at the hospital. The neurosurgeon decompressed and fused my spine from C3 to C7 posteriorly. When the surgery was complete and they were turning me over, something went a rye. All the bells & whistles went off that were monitoring my nerves & spine. They immediately took me in to have an MRI and found nothing to be wrong. When I woke from surgery, my surgeon, his assistant and my husband were all there and the neurosurgeon asked me to move my fingers, hands and arms. The only thing I could move was my fingers a tiny bit. The neurosurgeon had an "oh shit" look on his face. He then went on to explained what had happened after surgery. My life has never been the same since. I had to relearn how to use my arms & hands which took almost a year. It has left me with chronic pain in both my arms & hands. While going through OT/PT it left me with tears in both rotator cuffs which eventually healed. So during this year while dealing with these issues, I was trying to get my pain managed and under control. Was referred to pain management facility cuz they had to give me very strong opioids and it was tricky to find the right combination. While I jumped from one opioid to another,my pain was getting worse and more difficult to manage. During this first year of while trying OT/PT i began swelling up and was showing signs of possibly RA, so thus was sent to RA specialist. After working with him for the last two years and being now diagnosed with inter-connective tissue disorder. I have been put on several different types of medicine to keep my symptoms at bay but between the chronic pain in my arms from the spinal cord injury and now the inter-connective disorder I AM MISERABLE. I have no energy, everything hurts all the time, including walking. Early on,they had been giving me prednisone to help but I gained almost 75lbs since the surgery in 2008. I don't take that medicine anymore. I have since managed to fall break my foot and had to have surgery (this was from being to drugged in managing my pain). Then when checking my nerves in my arms & hands with an EMG test, it was discovered that my ulna nerve was being crushed in my right arm. I was loosing functionality in my right hand, so they did surgery to correct that. I still have difficulty with my right hand, so maybe it wasn't just an ulna nerve problem? I was told that my right hand difficulties could be coming from my spine, from the original surgery.

So hear I am,trying to explain this very complex situation (but there is so much more as with everyone's situation) but I'm trying to keep this short. That and it hurts to type, or work at a computer for anymore than an hour at a time. I WAS a type "A" person, worked as a police dispatcher, flight for life dispatcher, volunteered for the police department. I have a husband, two grown kids (out on their own), 4 Grandkids any my elderly Mom who all counted on me to be there to take care of things. I now live with chronic pain on a daily basis due to the spinal cord injury, inter-connective tissue disorder, recovering right now from my arm and foot surgery, I also attended a rehab center to change my chronic pain drug which were opioids to a synthetic opioid which was to help with withdrawals since I was on so many pain drugs and it was to help manage my pain but it's not helping as I would have liked it to. I still take an opioid and anti-anxiety drug, nerve pain drug, antidepressants, muscle relaxors and a handful of drugs from the RA doctor. He is now suggesting that I get monthly drug transfusions to manage my ICTD cuz now it's spreading to my hips which is making it very difficult to walk. This is really scaring me.

So you ask why I would post on this site, like I said encouragement from my Mom, family and friends to see if we can get part of the old Kelly back. I'm willing to keep trying to get better but it's very hard day after day living with the pain and all the drugs but especially when you feel like your not getting better only worse. I really want a doctor or facility to look at my whole picture and see what could be done to regain some of my strength, energy, maybe even become pain free.

One of the questions that I keep asking all the doctors is the spinal cord injury after the surgery and the ICTD possibly related? Most doctors have said no,but I did find a doctor that said hmmmm maybe. He went on to explain that maybe I was allergic to the metal that fused my spine together. So I got on the Internet and did some research and found that sometimes the metal, like titanium (mine was titanium) has a small percentage of nickel in it. It's like when you wear cheap earrings or cheap jewelry your skin or body can react to it. I was asked if I had any metal allergies. I didn't think so, but I know when I put earrings in that have nickel in them my ears puff up, turn red and get infected. It got me to thinking that could it be that I'm allergic to the metal in my neck. I was never tested for metal allergies, so I had a skin test for different kinds of metals. Those tests came back pretty much clear, but in my Internet research I found out that you need to have a specific blood allergy test called MELISA test. There is a website called http://www.melisa.org that has lots of info regarding this test. My problem has been finding the right doctor to get this test performed for me and wanting to get a lot of my questions answered, like......i.e. If I am allergic to the metal, can I take it out? Will my spine stay stable? Is it causing the symptoms of the ICTD? If I am allergic, has the metal already poisoned my body or could my body heal itself if it's taken out? My ICTD didn't start until after my surgery, so I somehow feel it's related. I feel that I can deal with the spinal cord injury issues. I've gotten back some of my use in my arms & hands but there are still some issues that I have to work with. The constant pain in my whole body now especially my joints, the fatigue and all the drugs. I just would like someone or someplace to help me sort all of this out, do the MELISA test for my own piece of mind and help me get healthy and feeling better again. I'm on disability now, it's hard to function somedays just even staying home trying to take care of myself. My family worries about me being home alone, since I've fallen several times already. I WANT MY LIFE BACK,or some sense I'm in control.

If anyone reads this and can help, or give me their input, I would really appreciate it. If there is a doctor that works at the Mayo Clinic that stumbles upon this and feels moved to help, I would be very grateful. I have family and friends that count on me, especially Grandkids I would like to see grow up.

Thank you for taking the time to read and listen. Look forward to hearing from you.

@jessiek haven’t heard from you in awhile. Are you doing OK? I know the fatigue is awful, but you’ll need to learn to live with it. Terrible thing to say to you, but I’m just being honest. Try to do something nice for yourself every day! What is something nice you could do for yourself?