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Cattl

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Caledonia
15 weeks ago has noticed I slurred a few times. This when was I talking a word here and there. then again a few weeks later-not anymore that I recall . No one has mentioned it to me.

Then 10-11 weeks ago I began to have stiffness arms and calves.
It went away in a few weeks. I have felt off since the 15 weeks.

Right after or during the stiffness in 1st week of March I noticed twitch in my right hand .Started to freak me out because it was in my right hand and since January it felt swollen or stiff. 2 days laters after that twitch in hand , it started in my right calve and foot then few days after that same on left leg, within a week spread up into thighs. The calves from knee down go 24/7 since first week of march and random thru arms and back and butt. Arms are never constant nor back but happen often

Had emg on right arm March 30 showed(no fascaulations) compression of Ulnar nerve this was backed up by MRI on my right elbow.

On april 11th had emg on both legs. Everything was normal besides showing the obvious fascualtions (sparse thru legs)

I was very stressed and seen an ALS specialist passed clinical exam 3rd week of april

2 weeks prior to that was cleared in clinical exam by neurosurgon at least strength wise

On may 5th went to mayo clinic Seen By Dr Jones(ALS specialist) cleared me and said no emg needed and backed up fasculations are never a first symptoms no matter what internet states

week after seen Dr feldman leader in ALS research(director of Neurology at U OF M in Ann Arbor MI stand same same thing on fascautions passed click exam


Here is my question : after what was explained above . Would these very well respected specialist easily spot Bulbar exam after 6-10 weeks
( I believe them on the fascualtions without weakness)
the sparse slurring which was really noticeable to me few months prior
I constantly have to clear my throat all the time.. no swallow problems
eating foods liquids but have to clear all the time etc.. last 5 weeks
I did not ask the this. I ask because its heavy to talk and voice gets very tired talking . But just passed click exam with Dr Feldman at U OF M heading a stem cell research for ALS-no really noticeable slurring to others even if i drink a bit wine etc..also not that noticeable to me but very little(maybe in my head)

I only ask for compassion in the this question I will not bombard this board in fear. I m looking to those with experience. Im a 46 year old male worried for my family . Would bulbar act in this in this matter. If the few slurs 8 weeks ago and difficulty clearing throat(now) if that truly was on set would it be apparent to the trained specialist in the exams
tongue is strong. bottom of throat has a heavy vibrating sort of feeling
as the tongue constantly . Stress?
thank you so much and compassion for your opinions .Again just trying to get real anwsers from people with knowledge
THANK YOU
 
Yes, Catt, they would have seen bulbar dysfunction. The same process that produces benign fascics in your legs can certainly affect speech, esp. when you become focused on it. Weather/allergies can produce similar effects. And voice fits and starts are very common -- when I haven't talked for a while, I do tend to produce a first word that is not intelligible!

I don't see anything to worry about. You had a clean EMG and evals from two well-regarded specialists, as we recommend. So I'll add to that reco daily stretches maybe including singing some scales, a nice nature walk (as most PALS here cannot readily undertake), spreading some cheer at a nursing home and/or volunteering at a food bank. There's nothing like perspective.

Best,
Laurie
 
Hi Cattl, because you have also messaged me I will respond here.

I can't see ALS in what is happening, just like the respected specialist neurologists can't.

ALS is a progressive disease where the motor neurones are dying off. You don't get something happen in one part of your body and then get better, then something happen elsewhere and then get better. The neurones die off, things get worse.

To directly answer your question - no bulbar would not start the way you described.

I wish you all the best as you continue to work with doctors to find out what is going on. I'm afraid we are not doctors and ALS is the thing we know. So when it falls outside of ALS we can only say, keep working with your doctors, believe them, but keep going back to your doctor and asking what they need to do next. Don't keep saying you are sure it's ALS as this blinds you to all the other many things it is far more likely to be.
 
wanted to thank you both for taking your time to respond . My legs are constant 24/7 twitching crazy(sometimes abs and arms back etc..)
but I will live to learn with it. I will not forget this disease nor the people diagnosed with it. The heavy throat some stuttering of words and twitching scares me but will take comfort form what you and the doctors have told me
God Bless
thank you
 
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