Kosmoskatten
Distinguished member
- Joined
- Nov 6, 2013
- Messages
- 224
- Reason
- Other
- Country
- SE
- State
- None
- City
- Stockholm
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.
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.