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← Return to Myotonic Dystrophy type 2
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Welcome to Connect @gailfaith. I'm so glad you posted
As you know myotonic dystrophy type 2 (DM2), also called proximal myotonic myopathy (PROMM), is quite rare. You are the first person on Connect to post about this condition. I hope this post will welcome others to join the conversation.
In the meantime, I'd like to introduce you to a few members who have hyperparathyroidism. Please meet @jmbjar @jean843 @allegro and @upnorthnancy who I'm sure will join me in welcoming you. Or you may wish to join them in the Endocrine group in this discussion thread https://connect.mayoclinic.org/discussion/parathyroid-question-are-there-endocrine-surgeons-with-expertise-in-parathyroid-disease-at/
Are you considering surgery Gail? Tell us a bit more about yourself. What is your biggest challenge living with MD2 and hyperparathyroidism?
Replies to "Welcome to Connect @gailfaith. I'm so glad you posted As you know myotonic dystrophy type 2..."
@colleenyoung I know this is a really old post and I am a decade late to the thread, but I am desperatley searching for answers since after 2 decades of problems they finally figured out I have type 2 B myotonic dystrophy. So far my disorder has caused pheocromositomo without carrying the gene for that disorder (left adrenal gland removed), problems with digestive system. leg weakness when standing or doing stairs, heart issues (pace maker installed 2019) gallbladder removed as well as uterus because of benign growths and recently hyperparathyroidism, hypercalemia and vitamin D levels going all over the place one day too low then too high. To make it all worse my 35 year old son was just diagnosed with md2 B and we suspect my 32 year old daughter may have it as well but she doesnt want to get tested
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I was just diagnosed with the gland issue and my first appt with an Endocrinologist is not until Jul 29!
As far as the MD2, until I went to Mayo all the neurologists I saw before I moved to a retirement community said I could never get better, only worse. At that point I could still downsize my house and put the house on the market and move. After I moved here, still no one put a name to my weakness, hence the trip to Mayo with my service dog. As soon as I got back home, I started with a physical therapist within a week and we get along great. I see him (Brian) once a week and we have a ball together and that motivates me no end to work out. At first Brian said he could keep me out of a wheelchair and for over a year walking was not a problem. Then last a July i had a "drop attack" as they are known, while out for a walk and I landed in the grass unhurt. A drop attack can be caused by cardiac or brain issues, but at least for me, the first part of the fall I have no idea what is happening until the second half of the fall, when I am FULLY aware of what is happening. The second attack was the day after last Christmas at a friends home, when I fell down the stairs, and had a concussion. Between Christmas and Easter, I was struggling with the concussion symptoms and due to unrelated problems with Medicare, I had to stop therapy. During that time I started using a walker so I could walk more normally, and now without the walker my gait is poor. So I wouldn't encounter a worse injury, they inserted a pacemaker this past April. So far so good.