Happy Easter & Passover!
It's been almost a year since my partner was diagnosed. Since then he has lost a great deal of muscle in both legs & arms. He can still walk (slowly) with the walker and his power chair arrived last week. He went for a 2nd opinion at the ALS clinic in NJ 2 weeks ago because considering a devastating disease like this, who wouldn't want a 2nd opinion by "specialists". Our hopes were high based on what we read on what to expect at the clinic - "a friendly team of experts" "a caring staff", blah, blah. Well we spent 4.5 hours at the ALS clinic of which only 20 mins was with a Dr. The remaining time was spent waiting. The ALS "expert" looked at my boyfriend's EMG written reports/results and asked him "so are you feeling better or worst" he then responded - "I agree with these results" My b/f said that's it, he said yes - make an appointment to come back in 3 months. So disappointing, the roundtrip drive was approximately 3 months and we waited 6 weeks for this!
For those of you being treated at an ALS clinic, what are the advantages, if any, compared to seeing 1 doctor (neurologist). Although I am not a fan of his present Dr, what can other Dr's or Clinics do for him that he can't do? Is it worth the 3 hour drive every 3 months to see a "team" of specialists. or a waste of time? If he isn't a patient at an ALS clinic, will he notified of upcoming clinical trials? With his current neurologist, he has been approved for 2 placenta stem cell therapy treatments, Dr hope it will be soon. I do know that at the clinic, he will have access to dietician, PT & OT (I think). At the neurolist, he goes 1/mo - do a few stretches and that's it - also a waste of time. Why even go to the Dr. period? Do those patients that attend ALS clinic live longer than those who don't? He was so disappointed with the lack of attention/care that he doesn't plan to return to the clinic but I can convince him to, if it will eventually be worth his time.
Thank you all for your input.