ALS COMMUNITY
Is this Normal for ALS? Cholesterol Meds, ambein, sleep disturbances and more.... :(

Is this Normal for ALS? Cholesterol Meds, ambein, sleep disturbances and more.... :(

Hi. I'm hoping someone can shed some light. My father was diagnosed with ALS last November, at the age of 63. At the time, he had intermittent foot drop and leg weakness, along with some subtle cramping/stiffness of the muscles of his hand (s), and mild twitching. His diagnostic road started in the summer of 2009, after subtle hand symptoms started as early as fall of '08, and temporary foot drop in March of '09. He saw many doctor's in that summer and was eventually sent to a neurologist because of an elevated CK level. His first neuro appt was in September '09 for an emg-results were inconclusive...at least that is what we were told. We, his family, were fearing ALS for a few months at this point, even though the only true red flag we noticed was weight loss and less activity with his right hand. His foot drop was very on and off, and to this day, I still don't always see it. After that neuro appt, he was told to get an MRI of the spine, where several minor back problems were detected...slipped/bulging discs, spurs, etc...but nothing that could cause his symptoms. From there he was sent for an MRI of the brain where some subtle white spots were found. But again, nothing that could cause his symtoms (symptoms). He was told to follow up with Neuro in November, 2 months after his first emg, 3 or 4 months after begining to see doctors, and around 6 months after developing foot drop-again, it's occassional. That day in November, only 3 or 4 months into his diagnostic road, he was told that he:
1.) had ALS; there is no cure etc... the devastation... He was never given a best case/worst case scenario.
2.) the next doctor he needed to see might not be able to see him for a couple of months
3.) He had a year or so to live

*At this point my dad was not given any tests for speech or swallowing, or lung capasity. The diagnosis and prognosis were made solely off the emg results from the large muscles of his body.

He followed up for a 2nd opinion at Mayo Clinic in Rochester the following week. They repeated the emg and also did the speech, swallowing, and lung capasity tests. They told him that although he did NOT show upper motor neuron symptoms, the diagnosis was probable future ALS, but because the upper symptoms weren't present, the diagnosis was Lower Motor Neuron Disease. They detected no speech or swallowing issues, as well as good lung capasity. They thew away the one year prognosis, and wouldn't give one. This was in early December, 2009. He continued working, and to this day is still walking, talking, eating,  and driving. He doesn't do the lawn work or walk too far...but he is still getting around some. He makes his way up the stairs to his 2nd floor bedroom, in and out of restaurants, etc..His voice is weaker, very rough at times, and then other times he sounds just fine, but quieter. I can see that the summer humidity is difficult on his lungs because he seems to take different breaths, deeper and less frequent. We followed up at Mayo in June and they told him that they didn't see much, if any, change in his muscle tone, reflexes, and strength. They didn't repeat the emg, this was based off of the office exams. They were impressed and surpised at the lack of progression in his strength and limbs. Still an LMD diagnoses but treatment as if it's ALS. They had us do an overnight breathing test- that didn't go so well. The test was the finger monitor test. They detected abnormalties and sent him for a sleep study that he had done at a local hospital not affliated w Mayo. They said he needs a cpap or bi-pap because of the results. He has not gotten one yet, but it is very clear that there are breathing issues. He is on ambien for sleep disturbances and lack of sleep. What we are now noticing is very much like narcolepsy...he will fall asleep without notice or warning. Then wake up and continue on with whatever thoughts were going through his mind during his brief (minute or so, sometimes longer) nap, rather than engage in what's actually being discussed or going on. We are worried:
A. about his lung capasity. Is there lack of oxygen to the brain that is causing these naps? Is this diaphragm related? B. Could this be one of the rare cases of ALS and dementia presenting simultaniously?

My mom says he acts out in his sleep (when he sleeps) like he is acting out dream or having hullucinations....ambien in his system or not doesn't matter, this is what he does and has on and off for years. How is this all related???

Lots of information, I know, but if anyone can shed light we'd so appreciate it. Oh, and by the way, this all started after being on cholesterol medication...Crestor....within months of taking the meds he started having als symptoms. I guess there are several people who take it or have taken it that develop ALS. When is someone going to take that drug off the market??

Educated opinions appreciated. Thanks for your time!
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