Bulbar PLS ALS ???

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Swedengirl

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My English may be pour sometimes…
4 years ago I noticed that when I had just 1 beer or 1 glas of wine, something happened to my speach and I could not say any cononants like K S L P etc, only vocal sounds (this was very strange. I had an antidepressive medication called Mirtazapine, which is a bit calming also, at night after I ha taken this med, I couldt speak at all.

A few mounth later I noticed that I couldnt sing as I used to, and I couldt talk as fast as I was used to either. I also started to only sip water slowly, This was august -18. The voice got worse and I began struggle to talk, it vas very hard, more like tensions than weakness, but I cold se that my ring cheek wasnt as wrinkled as I used to be.In spring -19 I had problems with spitting and a strange feeling in my lips begun, it felt strange to smile. In Dec -19 I did an clean EMG and an other one also clean about in feb -20. and when eating it started to feel strange and the food wold stop far back in my tounge sometimes. I have done 3 MRI and nothing was showed .

In Juni -20 I did another EMG it was clen but it showed something in singelfiber emg in my lips.

Since june -20 I havnt done any more EMG. Today I can hardly speak and my tounge is weak and tense. My lips are ”halfdead” I have a crooked smile. My facemuscles are getting weaker day by day.
My muscle in my troath that cuffs is gone so every morning I havet o huff if you know what I mean, I breath good, and I regurlarly test this at home. But its lack of breath when I speak. Icant say that my jaws is weak either, I chew like normal. But there is a strange tense in the jaw mouth tounge, Its weakness combined with tension.

I also have problems handeling food in my mouth from side to side, and I swallow slowlier but I can svallow OK. I have had this cramps in my throat, and that have been the worst to have, but my doctor gave me an exercise, so I havnt had that for about 6 month.

In genaral I feel great, I am strong, no weightloss and I am never tired. I work 5 days a week, but I am not that social any longer, I mostly hang out with my children and grandchildren, and life is good, but what will happen in 1 month, 1year?? I will soon have another EMG and I guess it will be clearer what I have. Anyway today I will start taking Rulizol, not that my doctor forced it on me, but I want it incase it should be ALS. And have anyone of you been affected by alcohol like me, the only time I heard about it was a guy that had Myasteni a gravis, and that I dont have. I would like to here your experiences. It is now soon 4 years since the first symtom.
 

lgelb

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As you will have gathered, this does not sound like ALS. What was suggested as the followup from the single fiber EMG? I wonder if you have seen a dentist to evaluate your jaw function and an ear/nose/throat specialist to check for a cyst or tumor?

Mirtazapine and alcohol can certainly interact, as can any antidepressant. ALS is not affected by alcohol as you describe.

Best,
Laurie
 

affected

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My husband noticed that alcohol affected his speech in the beginning, but soon everyone could hear his speech issues all the time. He was dead not much more than a year later.
He felt fine, but he also lost all speech and swallowing, and his hands and had to sell his business. He was often asked early morning if he was drunk, and could not pick up a cup, nor squeeze a peg or turn a key.

You are saying here what you feel, experience and think.
You have instructed your doctor to prescribe you medications.
But what have the specialist doctors said about their examinations and the clean EMG tests they have ordered?
 

Swedengirl

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My neurologe think this is very strange, but he doesnt seem to know that som people can have bulbar onset in PLS, and when I say psedobulbar ALS he says that I should have more problems with my limbs? I dont know. There is something called IBS isolated bulbar.... but he hasnt heard of this, so I have to push him for things to happen. But my severe problems with talking and eating and that it clearly is progressive must be something. But can one feel so vital after nearly 4 years?
 

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You are spot on - you still feel so vital after 4 years, that just doesn't add up.
If your doctor is not an ALS specialist and you suspect ALS/PLS, rather than getting your doctor to prescribe a medication that can damage the liver because you think you should take it (and riluzole is shown to work best when started very early in the disease, not 4 years later), you should be asking to be evaluated by an ALS specialist. That way you can stop playing doctor, and get some actual answers. Worth a thought.

You are not describing bulbar swallowing issues either, so saying you have severe problems eating is an exaggeration - if you had severe problems eating you would have a feeding tube directly into your stomach.
 

Swedengirl

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Everything else has been checked. My doctor has no suggestion, but everytime we meet, and that is once every 2 month he says that he cant ruel out ALS. That and the fact that this is progressing stedily, made me pop the question about Rulizol. Im not playing doctor, but what would you do in my situation? The doctor that made the single fiber emg is an Als specialist, and he said it might be an early pseudobulbar palsy. He only did the emg so he is not my doctor. After the emg with him I got so much engsiety that I didnt want to know more, so I paused the whole process. But now its getting worse day by day, but I have no enxiety anymore.

My lips have become thinner and when I smile I cant control them. When talking its very nasal and strange voice, like someone that has cerebral paresis. My lips are numd/ I can feel them but they are so weak, especially my lover lip and they are so dry that they styck on my teeth constantly. I have bite mark in my cheeks from eating. And see a specialist!!!I have now been waiting for just an emg för 6 month. Sweden is great, we dont pay more than about 120 dollars a year for healtcare and not more than 300 dollars a year for our medicins, but we have to waiit for ever....

And I love that you say this is not ALS. But I am not so sure, I know something is very wrong and getting worse...
 

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I'm so sorry the process is taking so long.
All you can do is remember you will never get back these months or weeks, regardless of whether you end up being diagnosed with a terminal disease or not. You are not displaying severe symptoms, I know that you are experiencing symptoms but you can speak and you can swallow. You said it is severe, then say you feel so vital. I lost my husband to bulbar onset ALS and I know what happens. What is happening with you is a mystery, and I can't imagine how hard that is.
It certainly isn't typical ALS. I don't want to sound dismissive, we just can't really say anything more as we can't see you, and are not doctors.

Please try to live all you can between getting to see doctors, you can still make those choices.
Do let us know once you have something final, and I truly hope it is not ALS or PLS. I hope you get answers soon, but with some neurological conditions, it truly can take time I'm afraid.
 

Swedengirl

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Waiting for EMG and I will post the outcome. But somtimes I think it would be better not knowing.
 

Swedengirl

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I did a EMG on friday and it was clean, that was very nice. But I have thought that pseudobulbar palsy would show on EMG. Now I know better. He told me that pseudobulbar palsy is what I have and maybe it can progress to ALS. What I have is progressive, but only affected in a few bulbar muscles. Somewhere I red that after 4 years without LMN it si called PLS, and other places I have red after 5 years...inthat case I am 1 year away. And does anyone here know about Isolated Bulbar palsy (very rare) is that only LMN involved. At least today I dont have ALS :) If it is possible that this might become ALS, isnt it the best to take Rulizol?
 

lgelb

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Yes, riluzole can be used in pseudobulbar palsy, depending on the policy in your country, because as you say, an ALS or PLS diagnosis can follow. Since isolated bulbar palsy is a LMN disorder, I don't think it would apply in your case since it would have shown on the EMG.
 
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