Possible bulbar?

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Bigboy632203

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Hello everyone.. I have not been diagnosed yet so I would like to mention that first. I’m not here asking for diagnoses just suggestions or if my symptoms could possibly match up with ALS I’m terrified.

It started a couple months ago with pins and needles sensations in both my thighs, buttocks, and knee areas as well as both arms. I didn’t feel them at rest but only after sitting or laying and then getting up to walk or extend a limb. This lasted for about a month. Through the course of that time I have experienced headaches and dizziness on the left side of my head, slight hearing loss and vision changes on the left side as well. I have lost weight I’ve gone from 203 to 183. But this has also been due to stress I have ent been eating or drinking much or sleeping as I e been so worried.

I’ve been to a neurologist 3 times with two different doctors. I passed all clinical exams completely normal. I’ve had brain and spinal MRI to rule out anything of the sorts. All blood work has come back normal.

Since these things had happened the past week things have been seeming to progress in my eyes. My pinky has become weak which has sort of affected how I grip things.. I twitch a lot in my thighs, bottom of feet, arms usually at rest after using them. I feel as though the left side of my throught isn’t working and my tongue and lips feel dry all the time. My tongue did shake a bit at rest at one point it doesn’t do it much anymore. Someone help?
 

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OK, firstly this resource is going to help you a lot, so please read it really carefully, slowly, and go through it twice. There is a lot of information in there to take in, so don't rush through.

You have been examined and had testing from a neurologist that has shown zero ALS symptoms, so being here now is a bit counterproductive. Why would strangers who can't see you say anything different from a neurologist who has actually done a clinical examination?

I can see you are very worried, but honestly, you need to go back to your PCP and ask them what is next and allow your doctors to work through this. I wish you the best and hope they find the cause soon. Remember twitching means nothing at all.
 

Bestfriends14

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Three neurologist appointments where they saw nothing wrong? There's your answer. Congrats on no ALS. You are very lucky. Any questions should be brought to your PCP.

Good luck to you.
 

Bigboy632203

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i apologize for not reading the guidelines first as they are really helpful and I especially don’t want to be sitting here bothering the terminally I’ll with my fears. I know you you all hear this things a lot I’m just terrified. I went and seen an ENT doctor and he because a bit concerned because he saw my tongue Fasciculations. He referred me back to my neurologist because he’s not well enough qualified in the field. I have an EMG on Friday and I guess my questions are does it start with not being able to feel the left side of your throat as you swallow? Or face muscles feeling like they’re hard to use? My left arm feels week and my walking is compromised and my twitching is in my feet, thighs, and arms after they are used. With still no actual clinical weakness as of yet
 

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No it doesn't start that way.
You can come back and give us the EMG results. Wait now until you have them as you have been told clearly this isn't ALS.
You can then get the help appropriate to your situation.
 

Bigboy632203

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So I had my EMG today. I don’t have the specific results in paper but the neurologist said he didn’t see any signs of ALS. But I’m having trouble getting breath on my left side as well as swallowing on my left side and clearing my throat on my left side is an issue. My question is the neurologist only tested my left hand, left leg and right arm. Would he be able to detect bulbar from those limbs or no? I am still worried
 

Bestfriends14

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Isn't this neurologist #4 for you? They know what they are doing and you do not, so by this stage, you really do need to believe them. You have no ALS, so I think you would be happy about this, no? Why continue chasing this disease when you show no signs?
 
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affected

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Time to go back to your PCP and discuss both your physical symptoms and your inability to believe doctors.
YES bulbar ALS would have been detected by EMG of the limbs. Time to move away from here which is fantastic news.
 
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