MCTD (Mixed Connective Tissue Disease)

@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?

Jump to this post

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.

Jump to this post

@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

Jump to this post

I admire you for the grace with whch you are facing your difficult medical issues. One thing that helped me many years ago is the ALCAT blood test for food and other sensitivities. I was shocked to realize that I had severe reactions to red food dye and all animals' fur. If you have not already done so, it may help you to know and avoid the worst triggers for your immune system which is already overloaded. Anothr plus if you have not already done this is the AIP diet, which is an exclusion diet that attempts to remove food triggers of inflammation. Facebook has an Autoimmune AIP diet support group that has helped me considerably. May you soon return to better health with your spirit remaining strong. Blessings.

Jump to this post

This I tried about 2 years ago it has helped a lot changed my life,, with mctd we can have some not so good days mentally, cloudy thinking, depressed we all know what I am speaking about. In researching any & all info I could get my hands on I come across this device, it’s proven .
So I bought it & tried it after using 1 month starting to feel & think 1000% better, when you have your mind , you can handle Pain. This I will use rest of my life! Got my mind, sound mind , right thinking does wonders for our spirit. My wife said I am like a new person amazing . Just go there web site . This product cost about $600 - 700 best investment I have ever made in my life !

The Fisher Wallace Stimulator® is cleared by the FDA to treat depression, as well as anxiety and insomnia. Used for 20 minutes, once or twice a day, the device works by stimulating the brain to produce serotonin and melatonin while lowering cortisol.

Developed by Fisher Wallace Laboratories,Fisher Wallace Stimulator®, the prescription medical device that is FDA-Cleared and approved in Europe, Canada, Mexico and Brazil. Seven thousand US doctors have prescribed the Fisher Wallace Stimulator® to 30,000 patients since 2009. In clinical trials and practice, more than 70% of patients who use the Fisher Wallace Stimulator® report a reduction or remission of depression, anxiety and insomnia symptoms within one-to-four weeks of daily use. The device works by stimulating the production of neurotransmitters and modulating brain activity, as demonstrated in published studies.
Developed by Fisher Wallace Laboratories,Fisher Wallace Stimulator®, the prescription medical device that is FDA-Cleared and approved in Europe, Canada, Mexico and Brazil. Seven thousand US doctors have prescribed the Fisher Wallace Stimulator® to 30,000 patients since 2009. In clinical trials and practice, more than 70% of patients who use the Fisher Wallace Stimulator® report a reduction or remission of depression, anxiety and insomnia symptoms within one-to-four weeks of daily use. The device works by stimulating the production of neurotransmitters and modulating brain activity, as demonstrated in published studies.
Hope this helps , God bless ps not a salesman for this company all I know
I once was down ,& in brain fog now I think clearly seldom down , up & moving .....

Jump to this post

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.

Jump to this post