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gailfaith
@gailfaith

Posts: 218
Joined: May 11, 2016

Myotonic Dystrophy type 2

Posted by @gailfaith, May 24, 2016

I was diagnosed at Mayo in Nov, 2013 with Myotonic Dystrophy type 2 (MyoDys2) and have been in physical therapy since Dec, 2013 and have just been diagnosed with hyperparathroidism and saw an internet article where two females had that combination and following surgery, one of the two muscle preformance improved. I am new to this Connect site, so would love to connect with others with MyoDys2 only or with both diagnoses.
gailfaith

REPLY

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?

@colleenyoung

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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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?

@colleenyoung

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

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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

@colleenyoung

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

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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

@jmbjar

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

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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

@jmbjar

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

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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

@jmbjar

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

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Jan Have you asked your doctor to test your levels of fluoride. Fluoride
can affect some people and not others but doctors do not test for it.

Also, if you drink lots of (filtered) fresh lemon water to help alkalise
your system.

Hope this helps

@jmbjar

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

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Hi Jan, Gail here! Yesterday (seems like a month ago though) I had a huge paragraph written to you and was winding down, when I hit something and it all disappeared. Neither I nor Colleen could find what I had written, so here I go again, But I am sure this will not be much like the previous version. My GP probably thought the parathyroidectomy was too much of a risk for the same reason you quoted, but I knew, from my previous experience with Mayo, that would not be the case and it surely wasn’t. Dr Melanie Richards was my surgeon. I had read that you don’t want anyone doing that surgery that doesn’t do at least 3/week and is confident enuf to do it in 15 minutes, so I was hoping to talk to the surgeon well before I decided to have them go ahead with the surgery. I was please that I was scheduled to meet with her by my second day there. I had several other scheduled appts with her, but she was ahead of the schedule and would find me wherever I was in the huge Mayo complex. She’d come and stand in front of me and say “I’m Dr. Richards” ….I guess in case I forgot what she looked like. There was several tests that needed to be done prior to surgery so she would have a better idea what she had to do. Basically I was scheduled for a session with a radiologist and from that I she determined which of the 4 parathyroids she would remove. I don’t remember the radiologist’s name, but as I was lying on the table with a pillow or whatever under my neck so that my head was tilted backwards, I felt someone messing with my shoelaces. It was the radiologist readjusting them so I wouldn’t trip on them ! Then as he worked on my neck, I said to him, I am not used to seeing people”s ears from the bottom up. He laughed ! I was scheduled for surgery on the 2nd Tuesday I was there but some other radiological tests needed to be done prior to surgery but the radiologist’s schedule before that Tuesday was full. I was told that on Friday, but then told to call Monday morning. Instead of calling I went just in case they needed me right away. Indeed somehow they managed to get that test done and surgery went on as scheduled. I was staying at a local hotel that had courtesy transportation to just about anywhere in Rochester, but routinely to Mayo. While there I needed something from a drug store and I had to get to a post office to mail home some of the free literature that is available there. Telling the bus driver what I needed, he stood thinking for a few minutes and then said OK, I know where to take you. I knew there was a Post Office next to the Mayo building, but he knew of a mall, several miles away that had both in a store. He driver said, he’d wait for me, but if he had a call he would have to leave and I’d have to call for someone else to get me. The drug store was just inside the door, so I went there first and instead of taking time to look for what I needed, I told them what I needed and that I would be back after I went to the PO which was about100 steps away. While still at the PO, the gal came with my needed items and said I could pay for it all right there. When I returned to the bus, the driver said I took less than 5 minutes. Not only Mayo tries hard to accommodate you, but it seems everyone in Rochester has the same attitude. Anyway, back to Dr Richards. I asked her how many of the pTH-ectomies she has done and she said over 4500! And she works 3 days a week and the only surgery she does is parathyroid and thyroid surgery. They told me I had to have someone stay with me for 24 hours as I had general anesthesia. The hotel filled that capacity!!!!!!!! By Wed morning I was headed to the airport and home. If there is any way you can get to Mayo, do it! It is well worth the effort. I haven’t seen any bills from Mayo yet, but if my memory serves me correctly, the hotel bill last time was more than Mayo’s after Medicare and personal insurance paid their share. And most hotels have special rates for Mayo patients.

@jmbjar

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

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Hi Gail , thank you for your reply .Happy to hear you had a wonderful experience
I will keep note of your surgeon for certain altho I do know that I am one with a more complicated case, would take more than 15 min pt surgery. Not sure if you told me before , but what were your labs – cal & pth . In my case I would have to pay for the entire sum
How many pt adenoma’s did you have removed Gail
Did you/do you have relief of any symptoms yet ?

@jmbjar

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

Jump to this post

No I haven’t asked nor has it ever been mentioned to me , but very interesting . I wonder if they even test for that in the lab here
Are you saying that fluoride can/may cause renal/kidney dysfunction ? How would the fluoride get into my body as there is no fluoride in our water, no fluoride treatments from dentist, nor in my toothpaste
Yes I do drink lots of filtered, fresh lemon water in order to prevent kidney stones as I have Hyperparathyroidism

Thank You

@jmbjar

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

Jump to this post

Jan, If that mention of fluoride was aimed at me, I never mentioned fluoride.

And I just did it again as I was almost done with another huge paragraph and it disappeared. Not in the mood now to start over again, Maybe tomorrow but I won’t promise anything. Gail

@jmbjar

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

Jump to this post

Jan, I’ll bite the bullet and repeat some of my missing email now. But a lot shorter version. Before the pth surgery my serum Ca levels were 11+/- for years and thereabouts. 4 wk post surgery the serum Ca was 10.8 and now is 10 .0 and the pth Ca is 10.3. During surgery they test something, I think maybe the hormone level and when they remove 1 parath. they wait to see if the level drops. If the drop is not satisfactory, then the remove a second gland, etc. Several doctors told me before that if I had the surgery I might get back some of my strength from the MD2, but I have not noticed any changes. I have not noticed any changes for he better or worse since surgery. Maybe my chance of getting another kidney stone is decreased. I joke that my body found the difficult way to get rid of some of the Ca post surgery with the huge kidney stone. Hopefully my first and last. I also am considered a complicated patient. I had a heart attack in 1983, now have a pacemaker inserted in April of this year due to drop attacks. Had two 6 months apart. No injuries the first time, but a concussion with the second. A drop attack is where you fall. How long does it take to go from vertical to horizontal? In the first half of the fall, I had no idea what was happening, but the last half I knew exactly what was happening. I also have spinal problems and have had both knees replaced. And I lost both biceps to a rupture due to Cipro and antibiotic and that happened 3 years before they realized what Cipro could do. And my MD2 was precipitated by a doctor’s mistake, from an overdose of cortisone. So I am never sure what to expect from a new med. I’d better quit before I lose this note also! Gail

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