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Kosmoskatten

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Since I am quite active on the forum, I felt it was appropriate giving an update on my diagnostic process.

I am not looking for advice ( although it is not a problem if I get it ) or a further discussion about my symptoms, and it did not feel like a good idea to post this in the DIHALS section. I understand that I need to trust my neurologist to diagnose me, not the forum.

Anyhow, I had a follow up EMG last week, and today I had a visit to my neurologist, with a discussion about it, a clinical exam plus swallowing test.

I still have no LMN involvement, which means ALS is off the table. At least for now. However, the UMN signs are still there; hyperreflexes, clonus, some spasticity (although it is waxing and waning, and it is not at all that severe comparing to other cases). And my speech is still off and on not good. Swallowing still in the clear.

But, I am happy about the fact that since september, I have not had that much progression, apart from the spasticity. I do not have a positive Babinsky.

I still have the hyperexability on my EMG (in the bulbar region), but no progression there either. And, I do not have any distinct clinical weakness as of today.

So what my neurologist is saying right now is that this MIGHT be PLS considering the UMN signs. But the lack of distinct clinical weakness speaks against it. If it is PLS, it seems to be slowly progressing right now.

We are going to do another evaluation in six months, EMG etc. And for now my neurologist wants to do further testing for Lyme, additional checks for Parkinsons ( even though that would most likely have showed on my previous testing ). We have Parkinsons in the family, two cases. We will also go further with a couple of other tests. We might try Levodopa, but right now it is too farfetched.

I am getting Baclofen for the spasticity, so I can get relief when it does hit.

So, all and all, considering circumstances, it was a good visit. The waiting game is never a good thing, but at the moment I am just so relieved that my EMG was not more dirty than last time.
 
Kosmos, kinda hard to reply to you with the knowledge you have more so than the rest of us. Maybe, for us, we're better off! :) I'd guess it's not easy for you to balance what you feel, what you know causes it and where it may go. I can only add that Baclofen has given me tremendous relief. I had horrible, unbelievable leg Charlie Horses in the middle of the night, all I could do was try and walk them off from wall to door casings to counter top to table to wall because laying still was worse. The real thrill was when I'd get one in each leg at the same time. Here's where I'm lucky over you... I don't know if the Baclofen was supposed to help that or not! :) Don't tell me it isn't supposed to either! Spasticity has me to the point now I can no longer lock my knees straight back... they're always a little bent. If I try they push back out. Anywhooo... you just may find the Baclofen really helps.
 
No progression... and slow progression... are the best!
That's all we can ask for.
Keep it slow!
 
Gee Dusty, somewhat of what I wrote to Kosmos would apply to you too being that you are extremely knowledgeable in this field too. I began to take on study of this like I did when I hit the books my FCC GMDSS License at 54 years old but then something happened... I just didn't want to. Maybe it's denial or it's like a job I had in the military... it was "on a need to know basis" and that kicked back in. A lot of what I have read I have not retained but it has helped comprehend somewhat when I read your posts. Whatever... maybe I'll get into it again.
 
I agree, slow or no progression is a relief. And Baclofen has really been immensely helpful, I have a reasonably small dose, so I do not get the wobbly legs too bad, and the tiredness is not overwhelming either.

Al, I don't get charlie horses that bad, only in my foot arches at night sometimes. I actually use the home remedy of tonic for that and it works. If I want to splurge, I have a gin and tonic. But Baclofen definately helps cramping since it is a relaxant.
 
>I still have no LMN involvement, which means ALS is off the table.

yea!

For me, I didn't know Baclofen worked or not until I stopped taking it for a day :) ...
 
I'm glad you had a good appointment. I agree, the waiting game is not good but glad your emg had no LMN involvement.
Hope the meds help make you more comfortable when you need it.
Thanks for the update!
 
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