Myotonic Dystrophy type 2

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.

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 ?

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

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

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

@gailfaith Not sure I am putting this in the right place, but Colleen is suggesting I start a new topic.......ceasing to driving a car! Background. I am 80 and I've been driving since I was 16, but prior to that I used to sit next to my father and steer, shift ,and maybe use the accelerator. I have taken many driving courses to maintain my proficiency. I have backed into several things, but have otherwise never been responsible for an accident, However I have been rear-ended twice. Both times the car behind me thought I had started to move when I hadn't. At least that what they said. Two of the courses I took were on race tracks and were advanced highway driving techniques, including driving on simulated ice. I estimate I have driven over 665 thousand miles (not including rentals when away from home.) One summer for a job I drove 14000 miles in 4 months while pulling a trailer with a 10 dogs in the car and trailer.. I traveled from Mass, to Chicago to Mississippi more times than can count. I drove the full length of the PA/Ohio turnpikes 4 times in one week.
Last week after getting gas and shopping in the store next to the gas station, I was merging onto a divided highway from the right entrance lane where I had a yield sign in my lane. Out of the corner of my eye I could see the hood of a car on my left, so I think I cut in front of that car. That driver never honked at me, but that shook me up. The next day I was traveling on a two lane road (one lane in each direction) at a spot where the road widened for a few hundred feet,with the right lane needing to merge to the left. lane. I looked in the rear view mirror, turned on my left turn signal and started to merge to the left when a car started to honk at me, then pass me on my right.still honking. I have no idea where that car was.. That shook me up again and I am beginning to wonder if my time to stop driving has arrived. I found a sheet from AARP on assessing your driving and if you scored between 0 and 5, their comment is: "Not to be concerned at this time."..My score back in June was 4 and now 5. But I am concerned. I was diagnosed at Mayo with Myotonic Dystrophy 3 years ago, but I have no physical limitations relative to driving. Walking yes, but not driving. .I was again at Mayo this past June and I used a walker this time there and there sure is a lot of walking to do there. I don't think the walker is good for me, so now I walk with only two canes, but no assisted devices within my house. Any suggestions? Right now I am limiting my driving to the retirement community campus where I live, to the store just around the corner and to to physical therapy once a week using only two lane rural roads for not quite 5 miles and only 3 traffic lights. About 3 months ago a car stopped short in front of me and I had to quickly pass him on the right shoulder, and I was glad as I realized my reaction time was still excellent..

Hi Gail,
How wise of you to recognize that your driving may no longer be safe on the highways. It must be hard to accept. I found this website from AAA about senior driving http://seniordriving.aaa.com/ It includes information on evaluating your driving ability and driver improvement courses for seniors. Maybe worth a look.

gailfaith here again. And again this is about giving up driving. ( I had this paragraph written once and when I tried to print it out before posting and I lost it all, so don't try printing your work.. Then I started it again and I accidentally hit something and I lost it again. So here I go again! ) If I use quizzes to evaluate my driving, it says I don't need to give it up yet, but i am ignoring that, as had two near misses in two days. I am having nightmares, have lost interest in things that used to interest me and I wake up every morning with knots i my stomach and all that still persists even though I now have a project that keeps me busy for about an hour a day. I haven't given up driving all the way as I still drive around this retirement community campus where I live, around the corner to the grocery store and to my weekly physical therapy appt which is back roads and only 5 miles, Fortunately my therapist and I have a great relationship and he motivates me. I do his Rx exercises faithfully every morning to hopefully keep me out of a wheelchair as long a possible. i will be using the on-campus visiting nurse service to get to doctor appts, and friends to get to church. However, my PCP comes here twice a week.. My project? For the last 2 months I have started a project here on the campus. This campus is divided into north and south campuses and I live on the south campus. Both campuses have a circular road around the buildings and the north campus has an additional road down the middle. The south campus is very different.in that it has a sidewalk down the middle and many sidewalks that radiate out between the cottages to the circular roadway. When I moved here in 2010, I was told the south campus road was 0.8 miles long but when I drove around it, it measured 0.6 miles. So about 2 months ago I decided too measure all the possible walking routes on the south campus !!!! The north campus circular road was already measured and that is one mile. I bought a measuring wheel for all of $29 and when it arrived I tried a short walk to see if I could do it without falling. A VP here copied a big map onto 8.5 x 11 inch pages for me. Each route is on a single page and they are in a notebook. I have myotonic dystrophy type 2. Earlier this year I realized using a walker was bad for me and my therapist disagreed so now I use two canes outside on the campus when I measure , one cane elsewhere and none in the my cottage. When he saw me use two canes, he was convinced my gait was much better. I ordered for all of $29 a measuring wheel and when it arrived I tried to see if I could use it without falling.. I used a cane in the left hand and the wheel on the right and that worked but was risky. So now I use two canes and tie the wheel to my left cane and it drags behind me. So it counts up not down, I have it upside down and to keep the counter housing from scraping on the pavement, I keep duct tape on its dragging corner which I have to add new tape as it gets pretty torn up. I must look weird, and people think I am just measuring my walks. But when I get finished, I will loan the VP my notebook and he will copy it and anyone that wants to know how far they are walking will know! The longest walk so far is 0.611 miles and takes me about 35 minutes. The shortest I haven't measured yet Twice a week, but not two day in a row, and not on the days I have PT, weather permitting, I walk a "long" walk that is close to or over 0.5 miles and that takes me about 35 minutes. If the road is wet I will not measure it as I don't want the wheel to rust. At first it appeared to be about 50 different routes, but now it will be over 60+ and counting as they add new cottages and additional sidewalks. I have about 30 counted so far. I keep track of my cumulative distances and I have walked in these 2 months over 11 miles.. My therapist is thrilled ! Monday I have an appt with my psychiatrist to discuss my persisting depression, as he does not know yet about my decision to curtail my driving or my project as it has been a while since my last appt.. .

Hi @gailfaith. I love when people return to update on their findings and progress. Thanks for persisting after a couple of failed attempts.

While you've given up long distance and highway driving, you continue to add mileage to your odometer 🙂 Good for you. I'm impressed by the contraption you rigged up with your cane and the measuring wheel. I'm you are quite the site around campus and are giving folks plenty to wonder and talk about. What a service you are providing for others while at the same time getting your steps in.

Gail, forgive my ignorance, but with such motivation, I'm surprised to hear that you have persisting depression. Thank you for sharing that. How have you been managing your depression up to this point? Is the recent onset been triggered by the loss of being able to drive?

Sorry it was not clear. Yes Colleen, you are right. The loss of driving I believe is solely responsible for the nightmares and depression. gailfaith.