Hi,
I am 39 and currently waiting for some answers. My diagnosis is being complicated as I have UCTD and working out what symptoms are caused by that and what could be others is difficult. I haven’t been referred to a neurologist as my rheumatologist is looking after my investigations at the moment but I know she thinks it’s MS.
I have nerve conduction today, and MRI (second attempt) in a couple of weeks.
The worst symptoms is the lack of use of my left arm. I am ambidextrous and use my left arm a lot. Getting dressed and undressed is a problem and I struggle to do my own hair.
I had a problem with my eyes, GP asked me to see optician as she couldn’t see in my eye properly. Took almost two weeks to see them, they sent me straight to the eye hospitals. They originally thought I had Optic Neuritis but then decided my eye was always like that, but I had quite severe colour blindness in one eye that bow seems to have resolved. The consultant asked if I was having an mri, which I said I was, but I freaked out at the first one so now waiting for the second appointment.
There are many symptoms that I have put down to my UCTD which now looking back I am thinking perhaps not. I’ve been hospitalised with severe chest pains which they just said was inflammation, but it goes all around my chest like a tight band then goes as quickly as it comes. I had to give up teaching dance and doing children’s parties as I would get too hot, especially in the summer and my eyes would go black and I would nearly pass out,
I have been under considerable stress due to my husbands ill health and his alcoholism and drug abuse. Symptoms appear to flare under times of extreme stress. Does this sound likely? I just want to know so I can deal with it.
many thanks
hI, is UCTD similar to EDS…?
There are some symptoms you have which could be MS…optic neuritis, chest tightness (MS hug)
Hopefully, the neuro can help.
Boudsx
It’s a mixed connective tissue disorder although consultant thinks it’s Lupus. Lupus can mimic MS but consultant is not convinced these new symptoms are connected. They appeared when I dialled back my steroids in the summer.
Hi, my daughter has EDS, which I suspect your UCTD could be similar too. She gets pain in her hands and swelling and hotness, when she over uses them, even writing for too long can bring it on. She also gets joint pains in her elbows and knees and her shoulder dislocates a lot, so these types of things if you have them could be contributing to your weak arm. And we’ve done the emergency trips to the hospital for chest pains as we thought she was having a heart attacks before she was diagnosed with EDS! It turns out the chest pains are costochondritis which is very common in EDS, as is inflammation, it does feel like it spreads around the chest and it is a crushing and severe sharp pain. So the pain in your chest ‘could’ be costochondritis rather than MS hug. Also, her EDS does give her an intolerance of hot and cold environments, exercise causes excessive sweating, clumsiness, tiredness, tremors. At other times she also gets blurring of vision and double vision.
Maybe try some Bach Rescue Remedy or Kalms before your next MRI to help you through it, try your hardest to stay relaxed and still, ask for some music through the headphones if that might help you (they clean them between patients and cover them too).
My first partner was a violent Alcoholic and my second, a violent, gaslighting narcissist (yes I can pick em, which is why I chose to spend the last 20 years raising my kids alone and it’s the best decision I ever made), so I can relate to the stress of living with that and I know it is virtually impossible to live a calm and stress free life under those extremely stressful conditions of an addicted partner without physically leaving them. However, whether it’s living with your UCTD and/or another condition like MS, you really do HAVE to look after yourself, PUT YOURSELF FIRST and do WHATEVER YOU HAVE TO DO in order to create a stress free life for yourself going forward as these conditions are exacerbated by stress, for instance, with EDS, stress causes rushing of adrenaline, blood pooling, chest palpitations and feeling like you are going to pass out, etc. I know that is easier said than done, for sure, but many have done it, including me, and there is much outreach help available to you, you just have to ask and start the ball rolling.
I hope this helps 