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Question about ALS (or Lou Gehrig's Disease)

Cactus Cowboy

Well-Known Member
One of my six surviving brothers recently received a medical diagnosis overseas, and those doctors think he has ALS, or Lou Gehrig's Disease. Lyme was discussed and tests were made, but the same doctors are sticking to their guns with ALS. Now, I know from recent personal experience that doctors aren't infallible: they thought I had gout after I injured my foot, since the signs & symptoms were similar, but an independent consultation with a podiatrist and a subsequent partial MRI disproved the gout diagnosis. It was actually a foot injury sustained while pushing an 800-lb. cart onto the mechanical lift in the garage at my last job. But I digress... this post is solely about my brother. :eek:

This particular brother is now 65 years old, yet my family has no history of ALS, nor do we have any history of cancer or other big killers... we DO have issues with arthritis, and all that rock climbing & small craft sailing probably didn't help ME in that regard, as I've already experienced some hand issues, but most of us live into our upper 80s or even our 90s. This brother lives in Italy, and Padua (or Padova) is reputedly one of the two oldest medical centers in that country, and perhaps Europe as well, I can't remember the exact details. But again, I feel that doctors aren't infallible, and we all know serious mistakes have been made in the medical field, otherwise there'd be no need for malpractice insurance. :(

This brother is tougher than a dollar steak, a real pillar of strength when my parents went through that bitter & prolonged divorce, and also a real hand when our beloved mum passed away almost five years ago. He has always been one tough guy, and resilient too, a black belt and everything, but now he's dealing with this diagnosis, and I'm trying to figure out what other diseases might exhibit the same signs and symptoms as ALS or Lyme, just in case these Italian doctors came up with the wrong diagnosis. Anybody here know the answer to that question? And I ask for my brother, not myself... a better man than I'll ever be, that's for goddam sure. Any info or advice will be greatly appreciated, and I say that most sincerely... :confused:

When I injured my foot earlier this year, one brother told me that modern doctors often feed signs and symptoms into a computer, then wait for the computer to kick out a diagnosis, or perhaps a 'short list' of diagnoses, aye? And evidently that's what happened when I received the phony gout diagnosis... but I'm not sure if European doctors also do this computer bullsh!t? Anybody know? Again, all I really want to know is whether any OTHER conditions or diseases produce the same signs and symptoms as ALS or Lyme... a million thanks to whoever can provide an answer, in the meantime I'll carry on some web research. Alright, that's it, end of transmission, time to check on dinner in the oven anyway. :rolleyes:
 

Cactus Cowboy

Well-Known Member
Oh, hey, thanks to both of ya, I will certainly check out the reference... and it's okay to talk about it here, all anybody ever really needs to know is that I hail from a nautical & military family (2 CDRs, USN Submarine Service, various other personnel, I was in the USA INF, go figure), we have a long & honorable history of service to this country, and we're related by marriage & blood to the Boone Family (as in Daniel Boone). My brother is tough, we're gonna look into all of this and see what we can learn, I dunno how good these European doctors are, maybe they're BETTER than what we have here in the U.S., given the faulty diagnosis I received awhile ago with regard to my injured foot. :confused:
 

ProATC

Active Member
Best clinic is in San Fran., ironically, the founding MD of this clinic died of ALS (Dead Doctors Don't Lie is a great read). Most docs are not familiar with the disease, so when you get one who tells you, they probably know. Usually the opposite happens, they tell you there is another diagnosis and then finally after quite a few months of testing everything else they say ALS. You will know in a short amount of time whether he truly has it or not, he will start to deteriorate quickly. 2-5 years is the average from onset or diagnosis, my dad was only able to make it 2. Lots of information on the interwebs. There is was an experimental drug from Israel, not sure if it is available here or not yet, expensive $300/pill, US insurance won't cover, of course. Maybe Italy has better access. Most docs don't bother with it or know what to do except provide palliative care. The ones that do treat the disease just want to keep testing to track the deterioration, since there is no treatment or stopping the disease. In my mind, it's like COVID, why keep testing? Better off spending time enjoying life...sailing! Best advice...plan ahead for arrangements to assisted care (not sure what they have in Italy), and don't wait until symptoms are so bad that you have to scramble. Get all of your affairs in order including Power of Attorney for medical decisions and financial matters before it is too late, including a will. If there is anything your brother wants to do while he is still functional, go for it before its too late. Best of Luck, God Speed to anyone who has this dreadful disease.
 

Cactus Cowboy

Well-Known Member
Boy, I ate a plate of delicious leftovers a few hours ago, then grew sleepy so I laid down for a minute... truth be told, I haven't been sleeping that well recently with all the bad news coming from every direction. But I did catch a nap, and I'm going to bed early tonight in an effort to catch up with the sleep deprivation. :rolleyes:

My brother first noticed symptoms over two years ago, and he kept all this testing to himself and his wife in Italy... didn't want to burden us with bad news till he knew more about what was happening. So that's a serious factor to be considered, given the time span generally allotted to ALS patients. :confused:

However, we don't know for sure whether the diagnosis is correct, hence my interest in other possible explanations... neural disorders which might produce the same signs & symptoms, for example. If the diagnosis is correct, well, I don't like to think about that scenario, having lost one brother already. :(

It's too late to start pulling web research today, and I'm still kinda tired, so I'll wait till tomorrow before looking further into it. My brother is a former estate attorney, so he already has his affairs in order, he's also planning a stateside visit with his kids in San Diego for Thanksgiving... perhaps I can make it too. :confused:

This has been a bad year in many ways, but I'm hoping we just get through it and have better days ahead... I talked to one outfit today about going back to work, and I might wind up signing on with them, I kind of want to hear from the county first because they have such a good retirement plan. :rolleyes:

Same one I was on earlier this year, before that fiasco with the idiot smoking near fuel... everything was going fine up to that point, then it ALL went south and I'm STILL trying to find my way back to some semblance of normalcy. I'll be glad when this election is over, I can tell you that much. :cool:

WELL, LEMME GO SEE ABOUT POSTING THOSE PICS I MEANT TO POST EARLIER, BEFORE I TOOK MY SIESTA... ;)
 
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