Myotonic Dystrophy type 2

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?

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.

Altho low vit d ( as well as very low vit d ) is very common in patients with Primary Hyperparathyroidism

Thought you may be interested in this Gail
http://www.jns-journal.com/article/S0022-510X(13)00268-2/abstract
Myotonic Dystrophy type 2

Vitamin D, parathyroid hormone and muscle impairment in myotonic dystrophies
Abstract
Parathyroid function in Myotonic Dystrophy (DM) patients has been poorly investigated.

. In conclusion, we arrived at the following: 1) severe vitamin D deficiency is common in DM patients and it is associated with secondary hyperparathyroidism; 2) primary hyperparathyroidism, though rare, may occur; 3) increased adiposity in DM may be a risk factor for hypovitaminosis D; and 4) high serum PTH levels may indicate a muscle impairment, at least in DM1.

Hi @gailfaith and @jmbjar I was thinking about you. Jmbjar we haven't heard from you in a while. Gail, how are you doing?

Hi Jmbar and Colleen...
I am hanging in there. It has been a tough year for me so far......3 surgeries (one at Mayo) , a concussison, a kidney stone and now waiting for a shingless attack (my 3rd, and first since vaccine!)to stop bothering me even though the sores are mostly gone. I tried taking Valtrex and a few days later gabepentin, but when I saw the side effects were the same as the Valtrex, I stopped both. The side effects were worse than the disease for me. Hopefully the rest of the year will be boring health wise. @ gailfaith

Hi Gail - Jan here . Did you find out more or have parathyroid surgery yet ? So sorry to hear that you got shingles . I was under the impression that if one seeks medical attention within ( I believe ) 4 hrs , there is something they can give a person so the shingles are not so bad ?
Have always wondered if the vaccine is worth getting as I have no way of finding out if I ever had shingles

Hi Colleen

I now have been informed that my renal/kidney function is declining. Apparently have been for some time now that I have copies of test back a few yrs. 10 month waiting list to see a kidney specialist.
Not related to the normal causes such as high bl press nor diabetes, so I highly suspect do to long term hyperparathyroidism.
My bio Mom passed from renal cell cancer , so of course this is also in the back of my mind

Hi Jan, SOOOOOOoooo sorry to hear that your kidneys may be shutting down. And yes, I had the parathyroid surgery in June at Mayo. The first calcium tests were still a litle elevated. but now they are right where they are supposed to be.. My PCP hasn't said a word about it as he was not in favor of my having the surgery. He said it was too risky for someone my age (80). Before I left for Mayo, I had scheduled an appt with a local endocrinologist. I saw him on Jul 28 and boy do I like him. I had a question and he answered my questoin right away via "email" thru the local hospital system.. There was a slight difference between the serum Ca level and the PTH calcium level and I asked him what the significance of the two values. One was 10.0 and the other 10.3. He wrote back, "I'm not sure, and it bothers me, but I am not concerned with either value for you." Now there is a truthful physicialn for you. I wrote back and suggested a possible reason and he replied that he would look into my thought with the lab! And by the way, if you ever had chicken pox, then you are "eligible" to get shingles. The vaccine is supposed at least mute the symptoms and I think it did for me. Where do you live that you have to wait 10 months to see a Dr. ? I had to wait 3 months to see the endocrinologist and I live in the states! @gailfaith

Yes I know, but I have no way of ever finding out if I had chicken pox or not. The shingles vaccine has shown to help only about 50% of those who get the vaccine but it is still fairly new .
I live in very Northern Manitoba Canada Gail an my kidney's have shown signs for some time which has been neglected to be noted by any GP's here, so not sure what stag I am in .
Yes, same thing I get here from the endo + surgeon. Too risky for me to have pt surgery , I am going on to 66. They say this due to the fact that they do not have enough pt surgical experience, not confident in their own skills - altho I have been also told that I am a more complicated case.
What means anything is what your pt hormone level was at same blood draw with ca of 10.0 etc. The values by themselves don't mean much . Are these you serum calcium labs after pt surgery Gail ?

I am so happy to hear you have this surgery behind you Gail, so glad to hear it was successful. How do u feel . Any symptoms gone away yet > You are so very fortunate to live where u do and have access to great surgeons etc

Jan Have you asked your doctor to test your levels of fluoride. Fluoride<br>can affect some people and not others but doctors do not test for it.<br><br>Also, if you drink lots of (filtered) fresh lemon water to help alkalise<br>your system.<br><br>Hope this helps<br>