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Jack B.

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Hello, hoping someone can help me with Bulbar ALS symptoms. In spring I ran fever and thought I had a sinus infection,with eye strain and numb tingling under my right cheek. In August I developed a twitch under my right eye and muscle tics and spasms all over my body (mostly in my thighs and chest).

I finally went to the doctor in mid-august with numb face and cramping muscle fatigue. Did an MRI which came back clean and bloodwork which turned up nothing except for an IGG positive test for West Nile. The IGM was negative.

Convinced it was the West Nile, my doctor sent me to a neurologist who ran an EMG and NCT on my legs which showed no abnormalities. He, too, figured West Nile or some virus of the CNS.

Numbness and tics all over my body (but was almost always present in my left shoulder and the right side of my face) until October, when all symptoms abated. After a week, the skin on my stomach and back was sensitive like it was sunburned. Then my left shoulder got really wonky (like it was asleep) with easy fatigue.

After a couple of weeks, I got a numbness on my lower and upper lips in the middle of my mouth up to the tip of my nose. I started having trouble saying some letter combinations because of dry mouth and thick tongue.

Dr. gave me lexapro for anxiety. First dose caused cramping last night and I noticed my voice was hoarse and my tongue was spasming around the edges at rest and protruded.

I'm now having cramping all over my body. The outside of my tongue is sore and tongue is sore when I press it against the inside of my gums.

My questions: Would Bulgar ALS show up in that order in a matter of a couple of days and do spasms precede tongue atrophy or come with it? Is it likely my difficulties articulating "sp" or "th" sounds every once and a while would be an indicator of bulbar onset without other bulbar signs? Or do all my other signs point elsewhere?
 

Al

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Your initial symptoms sound like a friend of mine when he got Bell's palsy. The rest are a quandary. West Nile really complicates things. Als symptoms and bulbar included usually take a bit of time to develop. Just as a guess I'd say you should get back to the doc and ask for another opinion. Try not to read too much about symptoms because the mind plays tricks on you when you start reading too much. We see it here all the time. Take care. AL.
 

Jack B.

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Thanks, Al. I was a little anxious waiting for someone to respond.

Would you mind answering a follow-up? One of the side efects of all the cramping and slight numbness is that my left forearm and wrist muscles tire easily and feel strained making my thumb feel a little weak and awkward sometimes. Would this be considering clinical weakness, or does the fact that I feel the muscle strain point somewhere else?

All best,
Jack
 

Al

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Hi Jack. Better not say THAT too loud at the airport. My attempt at levity today. Hope you don't mind. As for your question I'd only be guessing on the basis of what I've felt myself but I don't usually feel a strain type feeling unless I have done something strenuous and pulled something. I can usually tell right away when I've done something like that and know I'll regret it the next day. I didn't start feeling this until about 2 years after diagnosis. I'd be looking for a second opinion or at least more tests if I was you. Take care. AL.
 

Jack B.

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I've read in your other posts that you sometimes use your hand/finger too much and it loses strength. When that happens, you don't get soreness in your forearm/hand from the muscle strain as you lose strength?

Thanks again, Jack
 

Al

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No not really. I am having joint pain these days in my mouse finger. I have a program that clicks the mouse for me but it doesn't scroll and my finger gets sore but not the wrist or forearm. AL.
 

Lindoglvr

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Hello Jack, I was going to do the HI Jack thing like Al, but that was his joke. lol.

Anyhow, a lot of your symptoms can still be related to neurological deficits caused by West Nile. It's one of those viruses that can really wreck havoc on the nervous system, like Lyme's can.


In regards to your hand and forearm weakness. Have you considered or has your physician considered a physical therapy and occupational therapy consult? You might want to suggest it as they can give you exercise, stretches, etc to help as well as OT can give you compensatory strategies or adaptive equipment if you need it.

Just a thought.

Linda
 

musicsmiles

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Ny Husband Has Bulbar Onset

My Husband Was diagnosised with ALS he has the Bulbar onset. He slurs his speech, dools when he drinks, has a very hard time eating. This pass week he's been having a very hard time sleeping, he will wake up several times during the night and he says it feels like he is choking...I'm wondering if the muscles that control his swallowing have become weaker...What do you think Al? and Jack..any of these symptoms?
What's next? He goes to the clinic in January 2007.

Thank you to anyone that may have suggestions or ideas on how to help my loved one feel more comfortable.

Musicsmiles
 

Al

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It is possible that he is producing more saliva or that the muscles are getting weaker. You say he feels that he is choking, is it possible that he is having a hard time breathing and this is waking him up? It wouldn't hurt to call the clinic and tell them what is going on. If he isn't on any meds to dry up the saliva they might see him sooner. AL.
 

musicsmiles

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He is Having a Harder Time Breathing

Thanks so much AL for your quick response. My husband is having a harder time breathing and it could be what is causing him to feel like he is choking. He is not on meds to dry up the salivia, I will call the clinic tomorrow. He is only on the Rilutek and the liquid med for his emotions. What is the name of the med to dry up the salivia?
Thank you so much for being here for me.

Musicsmiles
 

Al

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Hi musicsmiles. The drug they gave me was Elavil or Amitriptyline. It was used as an antidepressant at 100mg and they found it caused dryness as a side effect. They usually prescribe 10 or 25 mg to start. It did help me but it did thicken some of the secretions and I had more trouble coughing them up so I went off it. There are other drugs that other people take that do the same thing. Someone else may offer insight to the others. Buscopan and scopoderm are 2 others. AL.
 
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lararobin

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Jack B

Are you still checking this thread? I have West Nile IGG antibodies and I am experiencing similar symptoms. I was wondering if you ever found a diagnosis?

Lara
 
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