Don't know if this is the right thread for this rant, but it's vaguely on topic, on supplements for ALS.
I have decided to go back on Mestinon, which I was taking when I was diagnosed with MG. I have been so exhausted and foggy recently, I had to try something. So I did a test run Saturday ... just wanted to see if the great effects I got from Mestinon last spring (energy, physical strength, some symptom relief) were real.
So I didn't take my heart med in the morning (it interacts with Mestinon, and I know I shouldn't mess around with the beta blockers, but ... ) and took 60 MG of Mestinon instead. Within 2 hours I could feel the energy kick in ... I actually felt "normal" again, i.e., I had as much energy as I did before ALS! Plus a sense of well-being. I think it improved my physical strength, too ... I was able to carry a big basket of laundry that my husband couldn't lift, and later on when my husband collapsed 4 more times that day, I was able to get him up each time.
The last time, he couldn't stand or help me carry him. His legs were not working at all. I got my computer chair, which has little wheels, and managed to lift him onto it, and was able to push the chair and him to the bedroom (over carpet, which was hard) and get him into bed. I'm not sure I could have done it without the Mestinon.
About noon, when I took my second dose of Mestinon, I realized my speech had improved! Not the enunciation ... that's gone forever, I fear, with the tongue atrophy ... but the speed. I could talk my gibberish much faster than before. Maybe half a normal conversational speed.
On another ALS message list, I heard from two PALS who also got energy and strength from Mestinon, but who did not continue it because of the side effects. In my case, it produces minor twitches all over my body, which are annoying, and stronger twitches than normal in my affected arm and hand. Other people get digestive problems with it. But I really need the strength right now. I just took it that one day (I did a clinical trial of one person!) as I don't want to stop the heart meds without my cardiologist's OK, so am currently back to my exhausted state. I'm going to write my cardiologist and see if there is some heart med I can take WITH mestinon, so I can start taking mestinon regularly again.
I really need some physical strength, as my husband is in a bad state right now. He not only collapses to the floor several times each day, but he is suddenly getting double vision, too, and has started to lose bladder control, with no warning at all. Sitting at dinner, he'll suddenly wet himself. He HATES HATES HATES this, and is really depressed when I have to half-carry him from the table to the couch. He says, "I should be taking care of YOU," but I told him, "That's what you get for robbing the cradle." My speech is so bad, he doesn't get my jokes any more. (Which is obviously no great loss.
) One of his falls Saturday was out in the yard, and I didn't hear him calling. He couldn't get up or walk, and was crawling toward the house on his hands and knees when I went out looking for him.
His pain symptoms started out 25 years ago with pins & needles, burning sensations and numbness in his feet and legs. Neuros back then were sure it was MS, but couldn't prove it, so they wrote it off as peripheral neuropathy (sp?) and later threw in spinal stenosis, and have done occasional useless surgeries, physical therapies, etc. for the last two decades. After I got him to bed Saturday night, I Googled "double vision inability to walk" and got a gazillion hits on MS. Turns out urinary incontinence is also an MS symptom.
Didn't mean to run on and on, but I'm pretty bummed about his condition and what he's suffering and has been suffering for so long. Our current doctor refused to give him anything for depression ... she said, "All we have to do is get rid of the pain, then he won't be depressed any more!" ... and it's a good thing I can't speak, as I probably would have screamed at her, "What do you mean, 'all you have to do is get rid of the pain!' Nobody's been able to do that for 25 years!"
Anyway, we did get a referral to a pain clinic last week and script for Ativan, which is helping his pain tolerance a little bit, and I just hope we get an appointment at the pain clinic on one of his better days, when he can help walk, and I can half carry him from the car into the clinic. If he's having one of his "can't walk at all" spells, we're up the creek. Thank heavens, he's skinny! This is where my being a lousy cook all these years really pays off!
Dropped off an "urgent" letter to the doctor this morning about his new symptoms ... double vision, incontinence, etc. Hope this lights a fire under her to refer him to a neuro. And hope he gets a better neuro than I started out with on the ALS battle!
I tell you, we're a great pair. Between his double vision and mine, the house is getting crowded!
Sorry to unload here on non-ALS topics ...
BethU