Status
Not open for further replies.

laurajh

Active member
Joined
Mar 24, 2005
Messages
40
Country
US
State
MA
City
Boston
I hope no one wants to kill me for bringing this up again, but the longer my father in law goes without a diagnosis the closer we get to the bad one. My husband has made it down to Florida to see his father (I wasn't able to get the time off work to go with him), and he says he doesn't look as bad as he was expecting, but still not good.

His left leg is pretty much useless. He can't balance on it and the muscles have wasted. he can't walk but can stand on the "good" leg (quote/unquote good because the latest emg showed weakness starting in the leg that still works). We can't get an straight answer out of him as to whether he can feel anything or not, when this all started a year ago his complaint was that it was numb and that he couldn't feel pain, now recently he said he CAN feel it. It depends on what time of day you ask him (he seems to be losing his mind a little). Although he said he did recently run over his own foot with his scooter and that didn't hurt (and I don't think that thing is lightweight). He's 3 months shy of his 80th birthday and has a known family history of als, 6 people were affected.

He's been to 2 or 3 neuros that said they don't think it's als, they don't think it fits. One neuro did the first emg in June and then he's only been bounced around from one to another that looked at the paperwork and agreed with the first. I don't know if these were even good neuros or if it was some inexperienced Mickey Mouse operation. I'm not even sure an actual neuro did the emg, it could have been just a technician for all I know.

He goes to the Mayo Clinic next week where they have specialists, but even though the previous neuros didn't think it fits als, it still scares me that they haven't found anything wrong because the more things they rule out the closer we get to the dreaded. I'm afraid that he'll be coming out of the Mayo with a diagnosis. They can't find anything else, so what else COULD it be? Especially already knowing that his father had the disease so he has a 50/50 chance of having inherited the defect.

For a person of advanced age, wouldn't it typically go faster than this? It's a year later and the latest emg indicated weakness just starting in the other leg. His upper body strength is good. I talked to him over the phone and he was slurring so bad I couldn't understand what he was saying, but then the next time I talked to him he was clear as a bell. Can slurring come and go like that? He's also never had any twitching. From what I've read weakness and atrophy is accompanied by twitching when it's als. He needs to use his hands to lift the bad leg when he wants to move it, but can move his toes on his own. There may or may not be numbness, he can't seem to make up his mind about that. A few months ago they said it was diabetic neuropathy even though he's not diabetic, but neuropathy suggests a sensory issue.
They were wrong about that diagnosis as they said physical therapy would help and it didn't. We're all getting more and more worried and the poor guy is losing weight because he's so depressed and frustrated.
 
The Mayo clinic is the best place to go, they should be able to help.
 
I know, that's exactly what I'm afraid of. A bunch of neuros (but probably less experienced ones) said they didn't think it was als, but the specialist with the better equipment will probably say it is. With the worsening symptoms, and not coming to any other diagnoses, what else would it be :(
 
It still could be alot of things, but this is a process of elimination that takes a long time. I recieved a hasty diagnosis of ALS back in April of 2008. It is almost a year and a half later and my diagnosis now is Monomelic Amyotrophy or Adult Onset Spinal Muscular Atrophy. Thru all of this, being patient was the hardest thing to do, Best wishes.
 
Last edited:
I hope you're right, but the family history scares me to death. 6 people have been affected.
Tomorrow is the big day and I've never been so terrified in my life.
 
Status
Not open for further replies.
Back
Top