Ellenpa2000
New member
- Joined
- Aug 6, 2007
- Messages
- 4
- Reason
- Friend was DX
- Country
- CA
- State
- Ontario
- City
- Toronto
I have a friend who has been diagnosed with ALS in April. He had the typical expanding ring shaped rash last summer and then his foot started to drop and drag a month later.
Many tests, including Lyme.. which came back negative. So then the diagnosis in April.
Meanwhile I know two other people with ALS, one of them being also pretty close, this within a year now.. Three people! I don't know 300,000 people. I don't say it's not possible, I just say this is TOO coincidental.
Yes things are getting worse. yes the one leg (of the rash) is getting thinner, and yes his other leg starts to have slight symptoms like cramps... and his voice is more raspy. ALS seems quite likely.
But that rash.. and the unreliability of the tests to find Lyme got me to push him a bit. His family is against him doing anything, as it's in their opinion: "grasping at straws and false hope", "leave things be, accept" so this is very difficult.
He finally got the courage to ask the neurologist for a referral to a Lyme specialist, the reaction was very strong, 99.9% sure he has ALS... and "maybe we should take your drivers licence away now"... A second physician was called in and he is allowed to keep it till October and they did give him a referral.
Well.. now he has to wait till Sept 5. What is this? He thinks it's normal, the specialist is a busy man and he should wait his turn...
I am so ..... upset, angry, feeling powerless standing at the side line, as this is URGENT in my opinion..
Anyway... You can only take a horse to water...
So the questions are.. can a physician say 99.9% sure ALS?
Should he get priority at that Lyme specialist, who by the way is also an "normal" physician?
We are near Toronto, Ontario, Canada...
Thanks,
Ellen
Many tests, including Lyme.. which came back negative. So then the diagnosis in April.
Meanwhile I know two other people with ALS, one of them being also pretty close, this within a year now.. Three people! I don't know 300,000 people. I don't say it's not possible, I just say this is TOO coincidental.
Yes things are getting worse. yes the one leg (of the rash) is getting thinner, and yes his other leg starts to have slight symptoms like cramps... and his voice is more raspy. ALS seems quite likely.
But that rash.. and the unreliability of the tests to find Lyme got me to push him a bit. His family is against him doing anything, as it's in their opinion: "grasping at straws and false hope", "leave things be, accept" so this is very difficult.
He finally got the courage to ask the neurologist for a referral to a Lyme specialist, the reaction was very strong, 99.9% sure he has ALS... and "maybe we should take your drivers licence away now"... A second physician was called in and he is allowed to keep it till October and they did give him a referral.
Well.. now he has to wait till Sept 5. What is this? He thinks it's normal, the specialist is a busy man and he should wait his turn...
I am so ..... upset, angry, feeling powerless standing at the side line, as this is URGENT in my opinion..
Anyway... You can only take a horse to water...
So the questions are.. can a physician say 99.9% sure ALS?
Should he get priority at that Lyme specialist, who by the way is also an "normal" physician?
We are near Toronto, Ontario, Canada...
Thanks,
Ellen