Diverticulitis and Muscular Dystrophy

@hopeful33250 yes I'm well, just now seeing this. Prior this conversation many things were taking place, both tough & miraculous, then after this conversation took place, many tough & miraculous things took place, as this testimony explains. Even ended up in the hospital the first week of December because of another virus & dehydration, but the outcome shall always be blessed.

So much vision on my limits, which is not my specialty, has hindered me this past year...but I'm an overcomer!

I had a MDA Clinic update 2wks ago...After 27+yrs of Muscular Dystrophy, I've never received a exam so thoroughly performed than the one at Mayo Jax! The NEWS received was NOT what we were EXPECTING! The doctor stated that he was 'expecting' that I have GNE Myopathy which is the absence of sialic acid, causing muscles waste over time leading to severe disability. Here's the "WOW" point! They are currently involved in phase 3 clinical trials where if it goes as the doctor expects, I could possibly participate in these clinical trials! These trials have been productive, even possibly providing muscle regrowth or stopping future muscular waste!!! Am I 'overly' expecting that I'll soon be regaining muscles or even preventing future waste? No...But I believe that God raised dry bones to life in Ezekiel 37; therefore I'll say as Ezekiel did “O Lord God, You know.” then I'll continue as he did by prophesying "you shall live. I will put sinews (muscles) on you"! I have hope, belief, & faith that it's in God's hands, and it's all for His glory, my prayer is that "God's will be done"!
Now, here's the description of GNE Myopathy, which is remarkably "spot-on" for my early symptoms & the past 27+yrs!
"The first symptom of GNEM is often foot drop, which is when lifting the front part of the foot becomes difficult, so the front of the foot is dragged on the ground when walking. As additional muscles become affected by GNE Myopathy this leads to difficulties climbing stairs or getting up from a sitting position, and weakness of the hands and shoulder muscles. People with GNEM typically start to show muscle weaknesses around 20 to 30 years of age. Over the following 10 to 20 years, many people with GNEM progressively lose muscle abilities and may eventually require a wheelchair."

On top of that, I'm thinking about freelance writing & going back to college for Graphic Design degree!

How bout you?

@dbwhitted What wonderful news! I am so pleased for you. It sounds as if God used Mayo at JAX to really bless you. All is going well with me. As I many have mentioned last year I had surgery for carcinoid cancer and this year I had a recheck and there was no new growth. I'm very interested in the info you provided about GNE Myopathy. My neurological symptoms began much the same as yours, with the foot dropping. I was DX with Parkinson's but all agree that I'm certainly not a typical Parkinson's patient. As a result, I'd like to ask you a question regarding your muscle weakness; do you generally have more weakness after movement and/or exercise? Well, once again enjoy the blessings of your new hope I'm very happy for you! Teresa

Hi @hopeful 33520, I was Dx at Mayo in Minn, in 2013 with Myotonic Dystrophy type 2 which I have been told is a form of Mus Dys. I can't help but wonder if the sialic acid you refer to would be beneficial for me. I looked into my Medical Dictionalry and all I learned it that that word pertains to the saliva. However I do not have foot drop so maybe it will not apply to me at all. Also what does GNEM stand for? as well as MDA Clinic? Thanks. Also can you supply us with a link to these clinical trials so we can connect with them. Yes it will be great if the Lord provides benefits for you if you can get into that cinical trial. We know nothing is beyond His abilty to do miraculous things. @gailfaith

Hi @gailfaith, it was @dbwhitted who talked about the clinical trial and GNE Myopathy. He is the one who can better answers your questions. Teresa

Hi @dbwhitted Have you seen the questions I posed for @hopefuly33250? She tells me now that you are the one who can better answer my questions. Hope to hear from you. @gallfaith

@gailfaith I'm not very active on here so forgive my delayed response 😀
You inquired about:
1) "what does GNEM stand for?"...GNE Myopathy but I'm unsure what "GNE" means, see link below for more.
2) What is "MDA Clinic?"...It's a annual clinic provided by MDA that's intended to address the progression of MD patients, as well as, provide important information about your dx & support.
3) "Also can you supply us with a link to these clinical trials so we can connect with them"
http://www.ultragenyx.com/patients/gnem/

to @dbwhitted Thanks HEAPS. Unfortunately this is my second try to respond do you as I had written a LONG response, but shortly before I was ready to send it, it disappeared. And I am not about to start all over again. Sorry. Since I still have no idea what the GNE means I have no idea if what you are experiencing is related in any way to my problems: Myotonic Dystrophy which was determined with a biopsy. . I have never had foot drop, but I do have muscle degeneration, so I will try to find out if any thing they find out in the trials, can be of any help to me.

I had written how my problems started and how I know it was a doctor's mistake that precipitated, the start of my dystrophy back in 2006. It is an interesting story but I"m not about to start writing that that all over again .I guess the good Lord decided that was superfluous info!!!!! . Again, thanks for getting back to me. @gailfaith

@gailfaith I would've loved to read it, maybe you could rewrite later?

I believe my wife's doctor was diagnosed last year with MMD. More later but I'm getting of PC, I'm tired...

Check these sites out:
https://www.mda.org/disease/myotonic-muscular-dystrophy
https://www.mda.org/quest/article/mmd-research-seeking-to-free-proteins-from-a-toxic-web
https://www.mda.org/quest/article/in-focus-myotonic-muscular-dystrophy

to @dbwhitted, OK, just for you when I get a chance I will rewrite what got erased. That has happened to me several times on this mode of connecting with others! It is frustrating. Maybe this afternoon. @gailfaith

Hi @ dbwhitter Well here I go again. I started this two other times today and both time they disappeared when I accidently hit something on the keyboard. Sure wish one could save what they write and come back to it later to finish. In 2004 and 2006 I had both knees replaced and both time I had no problems from the git-go! In fact after the L knee (2004)was done I went back in about two weeks and the nurse asked me where was my cane. I said I haven't needed a cane and she said they should put me on a pedestal in the waiting room! BUT, before I had any surgery, the doctor was alternating between Synvisc and cortisone shots to delay surgery as long a possible. One time he gave me a cortisone shot on a Friday and I was fine for the weekend, but I woke up Monday morning very weak. I basically did nothing all week and Friday, I was back to what felt like normal. The next time I saw him, I mentioned that to him and he said: "we'll never give you another big dose of cortisone.". Two years later I had the R one done and two months after the surgery, I was back for a check-up and he said that there was fluid in the knee and he would have to aspirate it. However, he told his fellow to do it, but try as he might the fellow couldn't so I said to get the Dr to do it which he did. That also was a Friday and was fine for the weekend. but Monday morning I was weak again so I knew he not just aspirated the knee. It is possible that the fellow was following routine so had loaded a syringe with cortisone and the surgeon saw the loaded syringe and injected it without recalling the prior comment. But I thought, OK by the next Friday I'll be OK again but this time the damage was permanent. I used to work for a veterinarian and when there was something that was contraindicated for a certain animal, it was written on the FRONT of their chart. No doctors where I used to live could put a name to my disability.

In 2010 I moved to a cottage at a retirement community alone as I have no surviving family. I flew to Mayo in Dec of 2013 from Lancaster, PA to Minn. (3 flights) and that is where they Dx me after they did a biopsy and other tests. They recommended PT so as soon as I got home so I tried to locate a physical therapist. We have PT people that come to the campus here, but when I fell and broke my arm earlier, I was not impressed with them and anyway I knew that I'd probably work at PT harder with a man! So I called my neurologist and he recommended a place for me.He said to go to Brian Hartz PT and when I got there I asked for Brian, not knowing he owned the practice with 3 sites about 10 miles apart. He was 42 at that time and from the start we have a ball together. He is pleased how I follow his advice and even come up with some exercises at home based on what he does with me there. Brian and I have so much in common, we are a "match" right down to the foods we like and dislike. Even our phone numbers are similar and he allows me to email him during the week. His wife has her CPA and manages the financial part of the practice. So since Dec 5th of 2015 I have seen Brian weekly except when he is on vacation or has a meeting to attend. He only works 3 half days a week, but I have my own time slot. To give you an idea how he runs the practice, in Nov of 2012, he closed all 3 offices and gave his staff a four day weekend (not over Thanksgiving) and flew all of them and their spouses or boy/girl friends to Key West for the 4 days!!!!!!! There was 33 that he took to Florida! I work hard at PT just to see his smile. If you google Hartz Physical Therapy in Lititz, PA, you can see his practice. In the main office he even has a Endless Pool (with a current so it is endless.) I used his pool for the first few months I was there but then started to use the pool here and doing the exercises he has Rx'd. for me and doing just land-based PT with him or his assistant. at the office. Unfortunately, my walking has slowly become more difficult, but I use no canes in the house and when I walk around the campus, I use 2 canes.. Have you seen on Connect where I previously described my walking project here on the campus? I use a measuring wheel to track my walking distance and since Aug 13, last fall as of this weekend I have walked 50 ( yes, fifty) miles. The measuring wheel is tied to my left cane and drags behind me! And so it counts up, not down since it is behind me, I turn it over and put duct tape on the corner that drags.

Where do you live?

Whoops I dropped the mouse and almost lost this again so I am going to sign off before I lose it! @gailfaith