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gailfaith (@gailfaith)

Myotonic Dystrophy type 2

Bones, Joints & Muscles | Last Active: Oct 15, 2016 | Replies (20)

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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?

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Replies to "Welcome to Connect @gailfaith. I'm so glad you posted As you know myotonic dystrophy type 2..."

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.

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