diagnosed with ALS?

[summer55]

Hi all,

I'm new to this. My dad was diagnosed with MND last week, while our family is still very devastated by the news, I'm trying to stay positive and make him feel better. But at the same time, I find the neurologist he was seeing very unprofessional. My dad was being told he has MND and only has 2-3 years to live based on the EMG result only, no blood test or whatsoever. While I don't really know how to read that report, I did my own research online, and found out that many tests and examinations need to be done before a final diagnosis. So I want to get you guys opinion first while waiting for his insurance to approve for a specialist at an ALS clinic here. My dad is only 57, and back in Sept 2011, he started to feel weakness in his left hand and started physical therapy, but at the end of Nov 2011, he had a surgery on his lower left leg due to varicose vein because it gets swollen when he stands for a long time. So he stayed in bed for a little more than a month before he went back to work, and that's when he realized he couldn't even hold a full glass of water, and there's noticeable muscular dystrophy on his left arm. I'm not sure if the surgery on his leg had something to do with the sudden change, or maybe it's because he didn't frequently use his left arm for a month? I got him to start taking Vitamin B complex and E now since I saw online that they help with people with ALS, and he continues to go to the physical therapy. But I'm wondering is it normal for a doctor to draw the conclusion based on just one test result? And is there anything we can do while waiting to go see an ALS specialist? I also saw that MMN (Multifocal Motor Neuropathy) has very similar symptoms with ALS and it matches my dad's symptoms too. Have anyone been misdiagnosed like this? Your help is much appreciated.

[Kitchener]

Hi
I'm sorry to hear of your father's diagnosis. Your father's neurologist sounds like he did the same bedside manners course as my first one did. Clearly he has seen something on the EMG he didn't like, most probably evidence of denervation/re-innervation. He would also have conducted a clinical examination which in addition to the atrophy and weakness you have mentioned, must have shown clear upper motor neuron symptoms for him to be so definitive. My first neuro condemned me to an ALS diagnosis after an EMG (and MRI) but in the absence of UMN symptoms, which was pretty rough. You haven't mention UMN symptoms in your post. If your father has them, unfortunately it really is bad news. If he hasn't, there is hope. In my case I got a second opinion and my diagnosis changed to MMN although lately my second neuro has admitted she doesn't really know what is wrong with me. As the diagnosis is so serious, and you don't seem to have a lot of conviction in it, I woud suggest getting a second opinion from a specialist ALS clinic (even if the first one was at a specialist ALS clininc).
The very best of luck to you and your father
Kitchener

[summer55]

Hi Kitchener, thank you for the reply. What are some of the UMN symptoms? The neurologist my dad was seeing is not an ALS specialist, and he seemed to be very reluctant explaining things to us, and all he said was there's nothing more he can do, so we are very frustrated at this time as we don't know what to do. My dad had a MRI done this week too, but again, I don't really know what that report indicates. We will definitely get a second opinion very soon, best wishes to you too.

[trfogey]

Originally Posted by summer55

But I'm wondering is it normal for a doctor to draw the conclusion based on just one test result?

It's not typical for a neurologist to tell a patient that ALS or other MNDs are possible at this early stage of evaluation, but an experienced neurologist certainly recognizes the signs and symptoms at this point. A clinical neurological exam and an EMG might find signs of MND. The neuro would see those results and usually continue with further testing. Some neuros don't tell the patient about what they've found and what it means and some do. Your father happened to go to a neuro who does tell.

Originally Posted by summer55

And is there anything we can do while waiting to go see an ALS specialist?

Not really. And please resist the temptation to become a family "expert" on all the possibilities that might account for your father's problems.

Originally Posted by summer55

I also saw that MMN (Multifocal Motor Neuropathy) has very similar symptoms with ALS and it matches my dad's symptoms too. Have anyone been misdiagnosed like this? Your help is much appreciated.

I see that you've already started consulting Dr. G--gle. It would be a really good idea for you to stop that until your father has his second opinion and a firm diagnosis in hand. You don't know (and can't learn) enough about neurology in a few hours of I n t e r n e t research to tell the difference between ALS and MMN (and a number of other conditions you haven't found yet), and you are foolish if you think you can.

Let your father's doctors do the diagnosing, advising, and prescribing for your father. You'll save both you and your father a lot of problems if you do.

Good luck to you and your father.

[Kitchener]

Hi
Your dad's neuro definitely went to the same medical school as mine! ALS is a complicated disease to diagnose, and really requires a dedicated specialist so with luck you may be only part of the way to a diagnosis, one which may not be ALS (but it is obviously still very definitely on the table as well). UMN symptoms can include any of a selection of the following (not exhaustive) list:

Slurred speech
Difficulty swallowing
Choking (especially on liquids)
Weird mood swings (laughing or crying inappropriately)
Poor co-ordination
Spasticity (very tight stiffness) in one or more limbs and/or the trunk
Loss of balance (eg inability to stand on one foot with eyes closed)
Clonus
Hyper-reflexivity
Babinski reflex

The key to the list is to look for a change/deterioration. Whilst the last 3 can be tested for at home, I wouldn't advise it unless you are a physician yourself.

Good luck and fingers crossed for a better result from your second opinion

Kitchener

[TedH5]

Your convcerns may have some validity, that being said he very well may absolutely have ALS. ALS diagnosis is one of exclusion. Typically an MRI, blood tests etc are done to to rule out other possibilities. The best thing you can do is be an advocate for your Dad with the Dr's but as Trfogey pointed out do not try and provide your own diagnosis by searching the web.

Good luck!

[summer55]

Thanks for the great advise everyone! I'll try to stay optimistic and not guessing around based on my own research. Will keep you posted with the second opinion.