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Lkaibel

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May 9, 2016
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1,529
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Lost a loved one
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06/2016
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MN
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Minneapolis
I think Clinic days must be a thing at the moment, Nuts and Sooner but had them too.

We had a generally unremarkable visit. The Doctor noted some slight progression in ankle weakness, not so much in the left hand which is hurting. He said that for the hand we actually need a hand specialist because he believes the pain there is arthritis and trigger finger type symptoms (Brian has had both). Given that the hand is slightly swollen, that seems reasonable to me. Pulmonary function is excellent.

An odd bit is that Brian's reflexes are toast. His leg AND arm reflexes are slow. Because of the slow reflexes and the slow progression at 6 months from diagnosis, the Dr. wants to do an another EMG in January (when his schedule allows). He said that after reviewing the first EMG again in addition to observing the slow reflexes and slow progression. He did say that slow reflexes in ALS are not at all common in ALS, most patients have hyper reflexes which I did know.

I know that when there are any symptoms not typical of ALS, and/or the patient does not meet classic diagnostic criteria that an EMG re-do post diagnosis is a fairly common event. I am not getting my hopes up at all.I am sure Brian is just a slightly A-typical ALS patient.

In spite of the dreary discussion on end of life choices, the one where my husband explained the plan again, and the rather startling mention of a DNR/DNI (Hey! We are not there yet!) option this visit did not make me want to jump off a cliff like last time. Seriously, I don't even know what it was but I was so upset after our last clinic I was kind of beside myself.

Off to an evening of TV and drinks. 6 hours at clinic took it out of both of us.
 
Lenore, I will keep both of you in my prayers. I am glad clinic went better for you this time.
 
Lenore - happy to hear clinic was better this time. I always enjoyed our visits there. I guess because mostly I could already see any changes, but loved working with the wonderful people there. Brian can't go anymore. He, however, didn't like them because he always had something more important to do and didn't want to waste the time. :) Hopefully things will continue to go smoothly until your appointment in the new year.

Hugs,

Sue
 
Thanks Sue and Deb. I got some more info and learned the slack reflexes thing really is super odd in ALS and could mean numerous things. So as much as I hate to see him go through one of those nasty EMGs again I am curious as to what that might be about.
 
Hi Lenore
I have had an atypical presentation at well, in the worst affected areas my reflexes were absent which caused a lot of confusion. For the first 18 months of investigation I had purely lower motor neurone symptoms and they did think at one time that I might have PMA or MMN rather than ALS. My neurologist told me that loss of reflex can actually be a lower motor neurone symptom.

It wasn't until this summer that I developed upper motor neurone signs and they switched over to the ALS diagnosis. Having said that the UMN signs are much milder and my illness is still classed as LMN predominant. My neuro goes over my reflexes every time as if it's a personal insult to him that they won't play ball. i only have a brisk reflex at one point.

Wendy x
 
I think a part of it is that without a definitive test for ALS, a part of a Doctor's mind, particularly an expert will whisper "what if the diagnosis is wrong?" at any atypical symptoms.

Brian is decidedly LMN dominant, and I know one Doctor called his EMG "very unusual" early on but never got specific about what he meant by that. He has chronic and active denervation clearly in two muscle groups, but not three I knew that part. Three muscle groups is considered "the standard". Given the symptoms and the test results at the time of Dx, we had simply reached the "but it's not anything else" point. I know ALS is a diagnosis of exclusion.

I sort of hate this because I don't want to talk myself into any false hopes. I caught myself thinking today of a woman in a similar situation who was diagnosed with MMN, after being told two years earlier it was absolutely ALS and not MMN by an ALS clinic. I KNOW that's one in a million though, IT was so hard to swallow this Dx I think now you could tell me Brian did not have ALS and I might just refuse to believe it. I also read about a couple who were told it was ALS, then a year later MMN, THEN got re-diagnosed with ALS six months after that. What a nightmare!

Anyway, just lets get the new EMG done and over I say. At least I can be with this time. I was not at the original EMG because we thought they were just testing an injured nerve.
 
I think that one of the worst things would be to be given a shred of hope, grab it, then have that shred break and fall to hit the ground again.

Lenore, I can only offer a hug - I haven't been in your shoes, so I can only try to imagine how you feel. What a terrible conundrum really - of course we don't want this diagnosis, but we also don't want to be jerked around and find ourselves back here after being let off the hook either. hugs
 
Thanks Tillie. Luckily Brian does not seem to understand it well and is just annoyed they want him to have another EMG. He seems to think it is just to "check on progress". I am leaving him with that thought because I don't want him getting false hopes either.

The good part with Brian and EMG's is he did not find either of his previous ones super painful, just annoying. I WAS with him when they did the head/mouth one and he did not even mind that much. Just watching that made me sort of sick, and my long ago hand/arm EMG hurt like crazy.
 
I agree that it's best to let him just look at it that way. I hope you can just put it all aside and enjoy the xmas/new year time xxx
 
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