ALS and diabetes

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patrick123

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Oct 4, 2012
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442
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PALS
Diagnosis
09/2012
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US
State
co
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thornton
I was dx with ALS in sept. 2012. Three months ago I was diagnosed with type 2 diabetes. After three months I had another blood draw. And everything was high. So now I'm on 3 meds one of which is insulin. Sometimes life keeps kicking you the behind. Just one more thing to deal with.
Patrick
 
Patrick, my husband has been Type 2 for many years--well controlled until ALS hit us. Now it's a constant battle. He's been moved to a high concentration insulin and is finally within range of reasonable readings, but only if he eats a "diabetic" diet. His conflict, of course, is that eating is one of his favorite pastimes now and he doesn't want to sacrifice it for what he sees as long-term maintenance. The other concern, of course, is keeping enough calories going in to maintain his weight--something a traditional diabetic diet does not provide.

Personally, I think he has more energy when he controls his levels, but I need more time and experience with the new dosage to present that to him. We know diabetes can cause fatigue, slow or stop healing, and eventually erode organs. He just hates to play what he calls the long game at this point. On the other hand, if he's sleeping all the time then he's really hurt himself.

You're right---the hits just keep coming.

Becky
 
Patrick that's not good news.
I'm so sorry you're dealing with this as well.
I can't think of a good reason why you are coping the brunt of terrible diseases.
I hope your doctor is full bottle on both of them for you.
Take care.
 
ALS appears to be at least in part a metabolic disorder, in that hypermetabolism has been identified in PALS. But especially as activity slows down, I would expect new diabetes dx in PALS and any other population.

Larry's Type 2 actually improved with ALS, to the point that he had normal A1cs (same dose of Januvia and metformin throughout) but he had so many rare conditions it is hard to say why. He also maintained his weight after an initial 10 lb loss early on. For what it's worth, his diet was high fat/high protein (more so post-ALS than before, which had been more carbs) because that's what was easier for him to eat. I do believe that change was helpful overall.
 
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I'll weigh in on this one. Patrick - I am so sorry you are hit with this too. My husband was diagnosed with ALS in 2010. In 2013 he was diagnosed with type II diabetes and was hit hard with it. With no warning his A1C skyrocketed. It was something 11.6. We controlled him with medication and diet for the first year. The second year he was diet only, well controlled, and then suddenly this past December his fasting numbers started climbing. He is on meformin twice a day and glpizide in the morning. He does still ambulate at home but he doesn't move as much as he use to. He uses the wheelchair when we are out and about. The diabetes is a constant battle and he is very good about his diet and fluid intake. He drinks a ton of water during the day.

I probably didn't help you at all. I guess I just wanted to share you are not alone with this additional disease.
 
And a slightly different story...

My PALS, my wife Darcey, had been diabetic (Type II) long before ALS. She was able to control it with medicine and did not require insulin. Since ALS, she lost about 100 pounds of weight... and her A1C has dropped to 4.7 (at last check). Her GP said, "If it wasn't for the fact that you have ALS and will die, you're otherwise quite healthy. Well done!" Lest you be concerned about this doctor's remark, know that he is quite respected, loved and appreciated by us for the many years he has attended to Darcey's health needs with absolute honesty and matter of factness. Since introducing the BiPAP into the mix, Darcey no longer continued with her weight loss and has held a steady weight since early 2014.

Jim
 
It's all just a crazy ride isn't it? No rhyme or reason. T's been on bi-pap for 3 years. Never missed a night. His weight is steady. He checks his glucose a few hours after dinner and it's always good. His fasting number is usually about 130 for the last few months. I've wondered if maybe his bipap needs an adjustment, maybe he is stressing during the night causing his sugar to rise. He has an appointment with pulmonary this week so we shall see.

This I've learned - love everyday we have together and not waste any.
 
Thanks for all the responses it helps in many ways

Patrick
 
Steve had a normal physical in December. The following August I had him in the er with a 700 blood sugar. He went on to develop gout,kidney stones, gallbladder disease, etc.

Lots of weird things happen. I firmly believe, for some pals, this disease is metabolic. All the changes followed by diagnosis 3 years later, is just too coincidental .

When you read different threads thru time on here, you see many pals have diabetes, kidney stones, strange vertigo episodes, etc. I dont believe in coincidence.
 
I've been type two for several years and usually had some struggle to keep it in the A1C range of 7 (daily 150+/-) but my Dr. was satisfied with that. Caught hell if I busted A1C-7 though. Since ALS, less than a year dx'd and on a g-tube, my daily has dropped to a 125+/-... a low A1C-6. Presuming it's the g-tube formula. However, I recently changes meters and my current average has bounced back to the 150 range. I'm guessing it's the difference in meters, but watching it fairly closely.
 
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