does it still point away from als? The puzzle continues

[laurajh]

My poor father in law is still having problems and no one can figure out what’s wrong with him. He’s convinced it’s als because it runs in the family.

He’s had ongoing problems on and off in the left leg for years. At one time it was bad circulation (got better after surgery). At another time it was sciatica-like pain (got better after a chiropractor told him to sit with a tennis ball behind his back). Another time another unidentified pain developed (cortizone shot in the spine helped). ALWAYS the same leg.

It’s since started up again, and he got another cortizone shot. Not long after that the leg went numb, and is described as dead weight. That was about a year ago. He’s been through did the tests, including EMG and was told it’s not als.
He developed problems with falling so they put him on a walker, then he was talked into getting a scooter so he could still get around and go places. He’s become depressed and just sits around not wanting to do much of anything. There is atrophy (Because he became sedentary? Because old people DO lose muscle mass?)

He’s 79 years old, will turn 80 in January. In a year’s time, if it were als wouldn’t it have spread to other areas by now especially given his advanced age? As far as we’re told, it’s still just the leg. I think he still drives and he says he still has his upper body strength. He hasn’t mentioned anything about twitching, so he probably doesn’t have that (it’s a pretty big and noticeable symptom from what most people describe).

He’s been bounced around from doctor to doctor and no one can figure out what the problem is. A neuro wanted to fit him for a leg brace – his primary told him no that wouldn’t work. This same primary recently told him he’ll probably never walk again. How does he know he’ll never walk if he can’t even figure out what the problem is??? Sounds like he needs to get a new primary.

They are repeating the tests to see if anything’s changed. MRI was done last week, no change. If this were a disc issue, wouldn’t that have been detectable on an MRI? You can see a pinched nerve or slipped disc.

They’re doing a 2nd EMG today I think.

The main question: if it were als, wouldn’t it have spread in a year’s time? Especially given his age. I read that the older a person is, the faster it goes. I’m thinking the lack of progression to other parts, no twitching, and the fact that it’s been numb still steers away from als, but on the other hand (or leg rather) he’s atrophying, so we don’t know what to think.

[Al]

Laurajh, you don't give any indication of where you live so we'll assume the US. Older people will lose muscle mass especially when in the late 70's moreso if they're inactive. Can he get a referral to an ALS Clinic? With the family history, it might be a good idea.

AL.

[BethU]

Laura, twitching is rarely a symptom of ALS onset. It developes later in the disease as the muscles struggle to stay alive, and is usually not noticeable or bothersome. (Unlike benign twitching, which drives people nuts.) Just wanted to set the record straight on that.

The EMG will show if there is something to worry about. Since they're doing it today, you should have an answer soon. But the numbness points away from ALS. And I agree with Al ... people do lose muscle as they get older, especially if there is inactivity.

[laurajh]

We're trying. We live in Mass, he lives in Florida. My husband is going down there in 3 weeks from now to see what's going on. There's the Mayo clinic in Jacksonville that my husband has been trying to set up an appointment with. He'll fly down again and DRAG him there if he has to.

We were just hoping for a little information in the meantime. For as long as I've known my husband's family I've been trying to learn as much about the disease as I possibly can, and from all the information I've picked up over the years, the symptoms he's been having aren't what would make a person think als. (except the falls and the atrophy, which we've only newly learned about).

[Al]

My father in law was falling a lot at around the same age. They were caused by TIA's. Atrophy can be caused by a number of things at that age. Does he still eat as much as he used to?

AL.

[laurajh]

No, but that's because he's depressed. He's lost quite a bit of weight from what it sounds like. No trouble eating, he's just in a bad mood and doesn't have much of an appetite. Up until this started, he was active daily and loving life. For him to go from that to just sitting around and feeling sorry for himself it must be pretty bad, whatever is going on.

The oldest person in the family to have gotten it was 70 and she went downhill real fast. Within a year. Whatever is going on with him still seems to be localized to the one leg. But I still think if it were als, at his age it would have spread to another area by now. Something new would likely have shown up. I just dont like the way they can't figure out what it is (the whole process of elimination thing).

(although, there is yet another sister who is in her mid to high 70's who we know is a carrier because 2 of her sons have it, but as of yet has no symptoms)

[laurajh]

This is how vague he is. He told us this week he also had a test where he had to drink a milkshake, but couldn't tell us what they were doing the test for (sounds like an upper GI). He never asks questions, just whatever they want to do to him he says "ok" and doesn't ask why. Oh boy I hope that doesn't mean he's been having trouble swallowing. His voice sounds normal though.

[laurajh]

Ok this is getting worse.
I was wrong, his voice does NOT sound normal. My husband is the one that usually talks to him and I guess he's just used to it, but he called today and I answered (it was the first time I've spoken directly to him since May) and I had a hard time understanding him. Monday's EMG showed weakness in both legs now, and now he's slurring. They wanted to send him to Cleveland, which is too far so they're going to go to the Mayo instead once they can get all the paperwork faxed in and get an appointment.

They still call him the "mystery man" and don't know what it is. They still say they don't think it's als because it doesn't fit the criteria (weakness, atrophy and slurring doesn't fit the criteria?) With his family history, I know he has it. What else would it be? I think he's going to come out of that Mayo with a diagnosis and I'm terrified for my husband's future now.