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Worrieddaughter1000

New member
Joined
Jun 20, 2017
Messages
6
Reason
Loved one DX
Country
CA
State
British Columbia
City
Port Coquitlam
Hello everyone,

This is my first post to the ALS forum and my 62 year old dad was diagnosed with ALS several days ago by a neurologist in Vancouver. He's seen two other neurologists prior who could not discern what issue he was having but I am not totally convinced that ALS is what he has...

From my understanding, ALS is a disease diagnosed by ruling out other potential issues and involves both upper and lower motor neuron damage. I personally tried to elicit the Hoffman and Babinski reflexes on him to which were negative suggesting no upper motor neuron damage. I am a registered nurse and not a neurologist but my many hours of research on ALS make me think his latest Neurologist may have been jumping to conclusions.

My dad began to have balance issues two years ago and about a year ago found that he could not lift his right arm higher than shoulder height. He walks with a slight limp in his right foot but for some reason, the limp disappears after he's been walking for about one to two minutes. His grip on both sides is equally strong which is further perplexing and he has little to no fasciculations or cramping.

I'm only 24 and I'm not ready to lose my dad... I've done research on other possibilities such as Multifocal Motor Neuron disease or even Lyme disease...

He's had many blood tests, an MRI, CT scan, and two EMGs. I do not personally know the results of these tests but both my dad and I felt the neurologist did not explain well enough why she thinks ALS is his diagnosis.

I guess I'm posting here to get some comfort and to talk to someone about this...I feel very alone with this...I'm very worried about my dad...
 
Daughter,

As a nurse, I'm sure you know the importance of a complete record for coordinated care. My advice is to get copies of the EMG reports, imaging and all other tests. If you want to post the EMG notes, we could be more helpful.

But, as I'm sure you also read, lack of evidence of UMN dysfunction is not a dealbreaker for an ALS diagnosis. And poor communication is not a proxy for a misdiagnosis. We all hope for a final dx other than ALS, of course. There are Vancouver people here who could perhaps comment on wherever your dad was last seen, and a second opinion after the dx is highly advisable.

Best,
Laurie
 
Daughter,

I can see your skepticism. I was diagnosed with als last Nov. at the Mayo clinic. With me, it's seemed pretty obvious as to what i had. The symptoms that your father show are questionable at best. I am obviously not a physician and by no means an expert. I would get another opinion. They are very thorough at Mayo and have an excellent reputation.
 
Daughter,

As a nurse, I'm sure you know the importance of a complete record for coordinated care. My advice is to get copies of the EMG reports, imaging and all other tests. If you want to post the EMG notes, we could be more helpful.

But, as I'm sure you also read, lack of evidence of UMN dysfunction is not a dealbreaker for an ALS diagnosis. And poor communication is not a proxy for a misdiagnosis. We all hope for a final dx other than ALS, of course. There are Vancouver people here who could perhaps comment on wherever your dad was last seen, and a second opinion after the dx is highly advisable.

Best,
Laurie

Thanks for replying back to my Laurie. You're right, it is important to have a complete record for coordinated care.

We have an appointment booked with another Neurologist in July for a second opinion.

My dad's GP and past neurologists are waiting on the report from the neurologist that diagnosed my father... The waiting is excruciating!
 
Daughter,

I can see your skepticism. I was diagnosed with als last Nov. at the Mayo clinic. With me, it's seemed pretty obvious as to what i had. The symptoms that your father show are questionable at best. I am obviously not a physician and by no means an expert. I would get another opinion. They are very thorough at Mayo and have an excellent reputation.

I am hoping for the best...my dad has an appointment with a different neurologist in July...I am going to suggest we try IVIG treatment as I heard Multifocal Motor neuropathy mimics ALS extremely closely...
 
Hi, Daughter
Was your Dad seen at GF Strong? I'm on VI, and that's where I went for confirmation after my dx here on the island.

I presented atypically, and my dx was confirmed only after a muscle biopsy. Even then, I was sent to Dr. Briemberg at GF Strong for the ultimate say-so.

When I saw her, I brought up MMN and the possibility of a nerve block (she seemed surprised I might know about that).

I think you're doing right by your father by investigating all possibilities, seeking a second or even third opinion. I found it helpful to have my questions written down when I went for the final opinion, it kept me focused and I didn't forget to ask what I needed to know.

The waiting is excruciating, for sure. I think your Dad is very lucky to have you, whatever the future holds for him, and I very much hope that you will find an alternate answer.

Warmly,
Liz
 
Hi, Daughter
Was your Dad seen at GF Strong? I'm on VI, and that's where I went for confirmation after my dx here on the island.

I presented atypically, and my dx was confirmed only after a muscle biopsy. Even then, I was sent to Dr. Briemberg at GF Strong for the ultimate say-so.

When I saw her, I brought up MMN and the possibility of a nerve block (she seemed surprised I might know about that).

I think you're doing right by your father by investigating all possibilities, seeking a second or even third opinion. I found it helpful to have my questions written down when I went for the final opinion, it kept me focused and I didn't forget to ask what I needed to know.

The waiting is excruciating, for sure. I think your Dad is very lucky to have you, whatever the future holds for him, and I very much hope that you will find an alternate answer.

Warmly,
Liz

Actually it was Dr. Briemberg that diagnosed him! I will be seeing Dr. Briemberg again June 27 along a ALS support team and I will bring up MMN.

I know she's an expert in her field but I'm still hoping she's wrong about the ALS...as we know, it's diagnosed by writing off all other possibilities...I hope she will let my dad at least try IVIG
 
Worried Daughter, Hubby has CIDP-MADSAM. He was initially queried to have ALS, and was found to have CIDP by a second opinion. He was given a week trial of IVIG with loading dose protocol and had good response i.e. hand grip strength increased significantly. So another opinion is always valuable. However, Dr. Briemberg is considered one of the best ALS diagnosticians in Western Canada. Hubby's presentation was with weak right hand and some issues in right leg with weakness. He wound up with devastating atrophy of right hand by the time he was diagnosed. The IVIG didn't undo the losses, but has prevented further losses. Good luck. Squeaky wheel gets the grease in our over loaded health care system so push for the IVIG.
 
Worried Daughter, Hubby has CIDP-MADSAM. He was initially queried to have ALS, and was found to have CIDP by a second opinion. He was given a week trial of IVIG with loading dose protocol and had good response i.e. hand grip strength increased significantly. So another opinion is always valuable. However, Dr. Briemberg is considered one of the best ALS diagnosticians in Western Canada. Hubby's presentation was with weak right hand and some issues in right leg with weakness. He wound up with devastating atrophy of right hand by the time he was diagnosed. The IVIG didn't undo the losses, but has prevented further losses. Good luck. Squeaky wheel gets the grease in our over loaded health care system so push for the IVIG.

Thanks for replying Laurel!

I'm glad your husband is not getting worse after starting IVIG! I haven't even met Dr. Briemberg yet but I keep hearing she's the ALS expert in BC.

We're going to see Dr. Chahal for the second time in July for the second opinion... When my dad saw Dr. Chahal the first time he told us "I'm not convinced this is ALS"... I can only hope for good news...

Nonetheless, I will continue to advocate for my dad! I think IVIG is worth a try...
 
Hi Daughter,

My Dad is 63 and has just recently been diagnosed also so I understand the worry and stress you are going through. Your dad's symptoms are very different to mine. My Dad had rapid weight loss despite eating normally he dropped from 11 stone to 7.5stone in 18 months and he has trouble breathing and swallowing. So with any luck your dad will have a more positive diagnosis.

Regards
Niamh
 
Hi Daughter,

My Dad is 63 and has just recently been diagnosed also so I understand the worry and stress you are going through. Your dad's symptoms are very different to mine. My Dad had rapid weight loss despite eating normally he dropped from 11 stone to 7.5stone in 18 months and he has trouble breathing and swallowing. So with any luck your dad will have a more positive diagnosis.

Regards
Niamh

I'm really sorry to hear about your dad Niamh... It's good that you're there for him in this time of need

I go from being hopeful to resigning myself to crushing sadness about it... There's a lot of waiting right now and it's awful...

Thank you for your well wishes
 
Actually it was Dr. Briemberg that diagnosed him! I will be seeing Dr. Briemberg again June 27 along a ALS support team and I will bring up MMN.

I know she's an expert in her field but I'm still hoping she's wrong about the ALS...as we know, it's diagnosed by writing off all other possibilities...I hope she will let my dad at least try IVIG

Daughter,

I found Dr. Briemberg to be kind and empathetic. But, I believe you will need to push for anything from her with regards to treatment. For example, she didn't even mention Riluzole to me, nor did she invite me back to see the team, but we do have an excellent support on VI.

And yes, even an expert can be wrong. I think it's possible to be practical and a realist while still keeping hope alive.

So glad you are an advocate for your Dad.
Warmly,
Liz
 
I would ask how this diagnosis was reached....what diseases were ruled out and why. Is there anything else it could be? Why or why not? I would get copies of all testing that has been done. In general, als is not a diagnosis made lightly. Many neuros who do not specialize in als and motor disease arent sure what they are dealing with ....and if the presentation is atypical it can be more of a struggle.

I would ask for clarity and why she is so sure.....

My husband had respiratory onset. He had an atypical presentation that the gp said was allergies.......after I pushed for chest xray it was pneumonia. Pulmo thought function tests were odd and diaphragm wasnt working properly.....then we got to a neuro.

No 2 people with als present alike.
 
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