@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?

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