Status
Not open for further replies.

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
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
NO 99.9% no I dont think so My neuro said probable ALS and I am not sure I have it. Has your friend had a spinal tap That is the gold standard for Lyme,even if a blood test is neg A spinal tap can be possitive. I had a rash a month before slurred speech and no one would commit to it being lymes and even if it wasnt a tick bit was the rash a virus no answers to that either.Then I thought it was a tetnus shot ,I racked my brain to see if I could find a answer to come up with anything other then ALS. I am going for a muscle biopsy which I have to beg for. And after 8 years I am still here and the longer I wait I get worse and I am hoping that something is not being missed. Wishful thinking I guess, but I cant give up or give in I hope you get a answer soon Pat
 

KateO

Active member
Joined
Jul 11, 2007
Messages
53
Reason
PALS
Country
US
State
Montana
City
Helena
Sure, a doctor can tell you 99.99% sure it's ALS. Unfortunately, a doctor can tell you anything he/she wants to say. I've had two neuros with terrible bedside manner. It can take a long time to get a diagnosis of ALS. Are you going to an ALS clinic? If not, I'd recommend it. They see more cases of ALS, so will have more experience and hopefully will be able to deliver the news in a much more gentle way.

As far as the driver's license, does your friend think he should be driving? I still drive, but have promised myself to ask if I'm able to do so EACH time I step into the car. ABout 1/2 the time I make the decision NOT to drive. If he got in an accident while driving, everything would be worse. Best wishes.
 

Ellenpa2000

New member
Joined
Aug 6, 2007
Messages
4
Reason
Friend was DX
Country
CA
State
Ontario
City
Toronto
Hi Pat,
No he didn't get the spinal tap test. Anyway, time flies, so Sept 5 comes soon, but I imagine there will be tests.

I also found out that one of the antibiotics (ceftriaxone) used for Lyme is also having a good slowing effect on ALS and trials are going on, in Canada it's starting in 2008 though. So getting ceftriaxone might be good no matter if it is ALS or Lyme. It will be a "hoorah i have lyme" situation, but with his luck it might be ALS anyways. Still the ringshaped rash and the timing of it all...

Did they treat you with any antibiotics? It's more likely you have Lyme, considering the rash you had (was it ringshaped, the typical Lyme rash?) and the time you have the symptoms now.. beyond the 5 years....

Good luck and keep us posted!

Ellen
 

Ellenpa2000

New member
Joined
Aug 6, 2007
Messages
4
Reason
Friend was DX
Country
CA
State
Ontario
City
Toronto
Hi Kate,

No ALS clinic here. It's in a hospital in Toronto where they do see a bit more of ALS patients, but I find the bedside manners as far as I have heard quite unprofessional.

Re Driving, fortunately he is still fine and will definitely not drive if it is in any which way questionable. I would want to know if it would be possible to drive with hand controls later on. So far he has no problems with hands, arms, upper body muscles.

As a few friends we've said that when/if it comes to losing his licence, we will pitch in to help driving him around as he really enjoys travelling through Ontario...

How long do you have ALS?

Take care and thanks for the reply,

Ellen
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
If it were Lymes it would have shown up in the spinal tap. and it was neg,Pat
 

Ellenpa2000

New member
Joined
Aug 6, 2007
Messages
4
Reason
Friend was DX
Country
CA
State
Ontario
City
Toronto
Hi Pat,

I understand that even the spinal tap is not 100% reliable.

As the ceftriaxone seems to be helpful for ALS as well, maybe that would be a route to go for you as well?

Problem is always to get the physicians on your side.

Take care,

Ellen
 

KateO

Active member
Joined
Jul 11, 2007
Messages
53
Reason
PALS
Country
US
State
Montana
City
Helena
Ellen -

I was diagnosed just this past March. Symptoms started last September with a foot drop. Now, I walk with canes - use a walker when I have to go far. My doctor recommended I get an occupational therapist to give me a "driver's test" to see if I really should drive. I made the appointment - then, cancelled it. I cancelled it because I thought I was the one who knew whether or not I should be driving. And, if the test happened to be on a "bad" day when I wouldn't have made the choice to drive, I'd have lost my license.

It's tough with the docs. I live in rural Montana and have seen the only two neurologists within 120 miles. I detest both of them. I have a good relationship with my internist, who treats the symptoms. Right now I have pneumonia and she is treating that. However, my internist really wants me to find a neurologist to work with on a regular basis. I've been to an ALS clinic last APril and plan to visit again in late October.

Does your husband have a good internist?

All the best
 
Status
Not open for further replies.
Top