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I had left side weakness without pain and obvious atrophy. I was losing weight and still gaining girth. Increased leg and hand muscle cramping. A couple of recent falls. Fatigue issues doing tasks I had always done. Over 60 tests had been done, including a spinal MRI and a lumbar puncture, with no indication of problems that would cause the issues.
 
Thank you for that. I have been through so much and even in the er Hospital neurologist hint towards ALS but never want to say because I’m under another neurologist care and awaiting test. I will pursue, because contrary to what a lot have said to me, I have found through a lot of these other neurologist that severe constipation caused by ALS indirectly affects the autonomic system which controls bowel functions combined with the extreme fatigue I have can cause the inability to produce bowel movement and cause malnutrition. I can’t even hold a pen to write my name. I went from running 3miles five months ago to a wheelchair today.So I thank you for your words. I will let you know what happens.
 
It is indubitably true that severe constipation happens with ALS. I don’t think though I have encountered it as a first symptom in a confirmed PALS. The people I know had it happen in the latter phases of the disease. It was a contributing factor in the death of one of our moderators in fact but that was in her last couple of months of a disease course of 2-3 years

Still obviously there is something very wrong and I hope your emg gives direction toward a diagnosis. Are they arranging brain and spinal Mris? If this is progressing quickly they should be moving along the diagnostic path
 
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Yes the other test are being scheduled. As for constipation being the first sign. I might have had other signs early but I never paid attention to things like cramps in my hands or the difficulty turning keys to unlock a door or tremors or tripping. I just attributed them to age and drinking too much caffeine or low potassium. But it was the constipation that got my full attention, because I never had a problem moving my bowels. As I said, I will let the forum know the results.
 
Sometimes constipation can be a result of decreased activity and not being hydrated enough. Also, caffeine withdrawal can cause constipation as caffeine is a stimulant and helps move bowels.

I was "regular" until 2003 when I started taking the antidepressant Remeron. From then on I had to use fleet enemas, increase my water intake and up my magnesium intake. Now that I'm not as active I make sure I take psyllium every morning with 12 ounces of water and that seems to make me regular.

There are many things that can make you constipated. Fortunately, there are many treatments for it. Get it taken care of ASAP.
 
True Kim, but when the gastro doc listen to my stomach, he was surprised to hear how slow the paristasis was. And at that time I was still active at 253lbs. Now I'm wheelchair bound bed ridden at 210. I have appetite but when I eat I get impacted and have to rush to hospital to get it removed. So I basically am starving now so I can breathe. How do you or anyone deal with constipation, I would appreciate some helpful tips while going on.
 
Kim, how much and what type of magnesium do you take? If you don't mind me asking,? And yes His strength is made perfect in our weakness!
 
Couple questions, a suggestion and some observations, Luther:


First, how old are you? How long you been in that wheelchair? All day? And what meds/supplements are you taking?
Second, if you've got a bomb that won't drop, you can just go in there and get it with a finger. Lubricate. No sticks.
Third, the ER docs are trained to stabilize a patient, not diagnose them. They're not experienced in diagnosis. They mainly treat symptoms until you're calm, then street you.
Fourth, this doesn't sound like any ALS I ever heard of.

Fifth, lack of food won't be a life-threatening problem. As long as you're hydrated, you can go several weeks without food. I spent a week in the desert without food, and damn little water. Didn't affect my survival or daily performance at all.
That's all I've got right now. If I were you, I would force my PCP to treat me every single damn day. Good luck.
 
Mike, I’m 58
Blood pressure meds with water pills.
The gastro gave me Linzess then switched to Trulance and neither of those meds moved my bowels, they just bloated me and gave me more gas. And combined they all,
Caused me a lot of loss of electrolytes which is why I wound up in ER. So PC adjusted it.
You’re correct about the without food, because I’m on water and minerals with baby food now.
And yes sir I keep hearing ALS doesn’t present like that, from my PC who has tested and send me to Rheumatologist, to Gastrointestinal, to Neurologist.
All I know is after test and blood work, I keep hearing, You’re fine, but.....
Like I said, EMG in three days, followed by CTScan, MRI and spinal.

There’s so many other symptoms, I just don’t list them all. But I truly appreciate everyone that is assisting me through this.
 
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Luther,

I take 1,200 mg. of magnesium a day, sometimes more. I drink about 64 ounces of water a day. I'm not a caffeine drinker but I do eat dark chocolate so that does give me some caffeine.

You may need a combination of things to help the constipation. I'm not in a wheelchair and I do notice that the more I move, the better my stomach feels and the less I'm constipated.

I've tried Miralax and it gave me severe diarrhea. For me, psyllium and magnesium work.

A good gastro should be able to treat your constipation issue. Everyone is different in what works best for them, including dosages. I would urge you to go back to your gastro.

I understand how stressful all these tests and waits can be. Praying that they'll figure out what's going on.

Best wishes on your upcoming EMG.
 
Thank you so much Kim
 
Anyone using a Bipap machine for breathing, approximately how long from the time you needed it, till you received it did it take?
No matter what my diagnosis is, I’m having serious problems breathing,especially trying to sleep, and am in need of breathing assistance. Even when I take a deep breath, my chest barely rises up, muscles are weak.
 
Bipap can be delivered very quickly but you would need some kind of testing to qualify with your insurance. Standard is a sleep study or pulmonary function tests but PALS have got it after in office screening. My sister did
 
Can anyway help me. Once you were diagnosed with ALS, who then assembled your team of doctors, or did you have or family or agency have to do all the work? I’m so weak and exhausted that, I cannot continue to set all the appointments and find all the physicians. I just trying to get a start on this.
 
Luther, you are getting way ahead of yourself. It sounds like you firmly believe you have ALS and are waiting for your appointment with the neuromuscular disease specialist so you can confirm your suspicions and get your doctors on board with you.

We don’t know what you have, and there’s a good chance it will turn out to be something other than ALS.

You need to see the neuromuscular doctor first and get a diagnosis before you go about assembling a team of doctors. You need to see a pulmonologist to get advice on BiPAP or something else to help you breathe. Until you get a better sense of the nature of your problems, we can’t really help you speculate.
 
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