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Hudson

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I had sought guidance in June and received helpful feedback. I have an update and would appreciate any thoughts.

I am a 65-year-old male. In mid-2016, I started to have swallowing issues with food occasionally stuck in my throat. I also started to have intermittent issues where my speech wasn't as crisp as it normally is. Weakness in my right hand surfaced in late 2016, and I went to a top neurologist. After a battery of tests, I was told in February 2017 that I likely had either MMN or ALS, and I started receiving IVIG treatments every two weeks. By June 2017, there was little improvement, so the doctor increased the IVIG dosage, which I continue to receive.

As of today, I have swallowing issues on a daily basis, with occasional episodes of gagging. My speech is noticeably less clear than it was six months ago, although it is still intelligible. My right hand, bicep and arm are much weaker than those on my left. If I lie down on my back, I can't lift my head; I need to turn to a side to lift it. My gait is sometimes less fluid than normal. My weight has declined from 180 to 172 pounds in the past year.

I still exercise six days a week but less vigorously. For example, once a week, I run about three miles but no longer run six. (I did bike about 20 miles a day for a week while on a trip in early September.)

My neurologist continues to say I either have some form of neuropathy or ALS. He and another doctor have told me that ALS can progress at different rates and that I don't have "Lou Gehrig's Disease," i.e., the most lethal form of ALS.

I would be grateful for any reactions.
 

Hudson

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New York City
Thanks. I'll raise the issue of another EMG. Also:

1. The neurologist treating me is a preeminent expert on ALS.

2. Both doctors understood that Lou Gehrig's disease is ALS. I believe that their formulation was just a short-hand way of saying that I did not have a rapidly progressing form of ALS.
 

Atsugi

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Hudson, after reading all your posts I see some hints and I don't see a couple things.

First, IVIG is not used to treat ALS. Introvenous Immunoglobulin is a combination of other people's blood cells, shot into a patient in the hopes that someone of those other people had an immunity to whatever the patient has got. IVIG is meant for patients with poor immunity. ALS is not one of them. ALS is not an immunity problem.

Second, you said last time that your doctor found "irregularities" on the EMG, but not ALS. That can mean something else, or it can mean nothing at all. A lot of normal people have plenty of irregularities that never are a problem. Often, a doctor will see something and not mention it, because a lot of folks have stuff that just doesn't matter. Many irregularities in the body just should be left alone. They're not going to affect you--or there's nothing to do about it anyway.

So frankly, I don't know why ALS is on the table. If anybody said you don't have Lou Gehrig's Disease, then that is saying you don't have ALS.

Also, you reported that the doctors have said you might have a neuropathy or an ALS. ALS is not a neuropathy.

Something is not being communicated well. It happens. The doctor's office is a confusing place filled with scary and confusing language. Also, frankly, most doctors don't know ALS very well at all.

Personally, since you're concerned about possibly having a terminal disease, then I would chase that down to finality. See a neurologist who is experienced with ALS and get an EMG from them. That should put this to bed.

All the clues you've posted about your speaking, swallowing, neck and hand, gait and weight are not reminding me of any ALS.. I suppose there could be ALS there, but I'm just not seeing that. The odds are you've got some other thing going on, or perhaps you--an active and vigorous guy--are noticing these things more than most people would.

By the way, I'm 62, and just this year my body has turned to shit. I don't have ALS-a neurosurgeon said my spinal cord has just gotten worn out. It affects EVERYTHING!

So good luck. Be sure you're using the right doctor and let us know how it goes. For what's it's worth, I don't see ALS in your posts at all.
 

Hudson

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Messages
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PALS
Diagnosis
02/2018
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US
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New York
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Mike,
Thank you so much for the thoughtful comments. I'm so sorry you had to go through the experience of losing your wife to gain your insights.
 
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