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Limb Girdle Muscular Dystrophy

Bones, Joints & Muscles | Last Active: Feb 27 2:44pm | Replies (15)

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@ditamontoya and @hopeful33250 .. I was diagnosed as having LGMDr23 in 2015 by two labs working independently. This is an interesting and peculiar disease. At my birth, the doc knew things were not right, but he did not know the details. He said I was a "floppy baby", and would probably not live long. Now, at age 82, I am still sort of floppy, I suppose. Anyway, It often comes along as part of a AI package of diseases, often related to a myeloma(amyloidosis) family. I have Gelsolin (Finnish Amyloidosis), many touches of cancers in my body, etc. One sister has died of this at 60, her daughter at 55, another dying at 75, another at 87. Now, another truth. Much of this may be environmentally related, such as radon, Round-up, mercury, lead, carbon monoxide, bitter cold working temps, extreme heat, gross physical exhaustion. Just noting the many potential triggers of LGMD. I played, coached and officiated football 30 years. Ran my last half-marathon at 50 yrs. Now, for the fun part. There seems to be no real knowledge of how LGMD works, or even what it does to nerve and muscle; thus no treatment beyond just going like hell every minute of every day. Some days I could barely crawl out of bed. But I have backpacked all over Oregon, Washington and Idaho. I have never been really smart but hold a BA, Master's, Doctorate. I have 20 great-grandchildren, including two Marines. So my advice to you is just go for broke, It will do no good to hold anything back. Fill this column with stories of what you have done with your life. We lived in motor homes for 12 years across the USA, Maine to Cal, Fla to Washington. And worked with churches around the world. So have fun with your life. And if you ever run into some doc who said your life would be a waste, laugh in their face, strap on your pack, and move-it, move-it oldkarl.

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Replies to "@ditamontoya and @hopeful33250 .. I was diagnosed as having LGMDr23 in 2015 by two labs working..."

I love this and love your story!!! Thank you so much for sharing, I absolutely love it. I have struggled for the past couple years and just feel like crap. Unfortunately, there is a string of my family that has tested positive for LMNA1b and I only got tested to see if my son would be negative. My dad died at 46 and we now know he was positive because I am. Thank goodness my son is negative. I have two aunts, an uncle, and seven cousins so far that have tested and positive. All the adults have some sort of pacemakers and my uncle had a transplant already. I try not to get wrapped up in the pitty party, but you are right....some days its hard enough just to get out of bed. I just need to force myself to keep going. I appreciate your story and it gives me motivation to keep moving foward. You have lived a success life and I am proud of you. Xoxo

Hello @oldkarl,

I agree with @ditamontoya that yours is a great story! It is definitely one which needs to be shared. I really appreciate your ability to move forward with life's challenges and create a life that is full and rewarding!

I'm looking forward to hearing other stories about people who have pressed on!