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lilly1

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Hi,

Sorry for taking up space on this forum, i know there's alot of people out there who probably need help and answers more than i do but i would really appreciate if any one you could give me some advice on some symptoms i have.

Firstly im 34 years old, i don't have any serious medical conditions, been feelings more tired than usual for the past few months, weakness, muscle pains, popping joints, twitching, left foot feels weak and seems unbalanced when i walk, left hand pinky and ring finger feel weak. Been to a few different doctors, have a few test done such as MRI, Blood work, and EMG - Nerve conduction test around 2 and a half months ago came back normal, ive been trying to ignore the symptom's but seems like they are getting worse.

I have developed some tingling on my tongue, weird sensation that feels like my tongue is being pinched on the top and mid part of it or have something stuck on it, i also need to keep clearing my throat, sometimes have trouble swallowing saliva but with liquids and solids it usually goes down, only with certain types of food i might need to take a glass of water to get it down smoothly, i haven't noticed much slurring but i do stutter some words at times, can move my mouth and facial muscles, can move my tongue around from side to side etc.. sometimes get a weird taste in my mouth as well, i also have a dry cough which doesn't go away, no excessive yawning as yet, i do get salvia on the corner of my lips at times, also i have checked my tongue and i have noticed some minor twitching when relaxed in my mouth but doesn't quiver or shake to much, i cant tell if its dry or numb but i keep getting the feeling that i want to to rub it on my teeth to make it feel better. Lips feel a bit dry and numb at times as well, haven't been able to notice any atrophy on my tongue as yet, in regards to my speech, my voice is a bit hoarse, sometimes i get breathless as well but can still carry out a conversation.

I should mentioned that i have Acid reflux issues and take Proton Pump medication for that in case some of these symptoms might be caused by that

Now my questions are :

Since ive had an EMG which was clean ( they checked certain parts of my body on the right side but not my mouth or throat) , is it possible that i have Bulbar onset of ALS from the symptoms i have mentioned ?

If there's a chance that this is something to be concerned about are there certain words that are more difficult for people to pronounce with the onset of Bulbar or any other symptoms to watch out for ?

In Bulbar symptoms what causes the slurring and issues with speech ? is it because the tongue is weak or shaky due to which you can't say certain words correctly?

With footdrop does it creep on you slowly like the foot starts to get weak or rubbery followed by a complete foot drop or does it occur suddenly without having paying any attention to it earlier ?

I went for a 2nd opinion and the doctor didn't seem to pay attention to the fact about my bulbar symptoms, he however order some further blood test to check protein levels and my muscles.

I would really be grateful if you could give me some advice regarding these issues and if i need to go investigate it further.

Thanks
 

MaxEidswick

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Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

Atsugi

Moderator emeritus
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Lilly, ninety-nine percent of what you wrote has nothing to do with ALS. Two things you wrote could possibly indicate a problem that I would have checked, if I were you. First, you mentioned footdrop. Second, you mentioned your tongue doesn't manage swallowing liquids well. Either of these would be considered a first sign of some sort of problem. Having both signs at once is just plain weird. Whatever you have, you should continue to follow up with your doctor.

You had a clean EMG, so I wouldn't worry about ALS. Good luck.
 

lilly1

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Learn about ALS
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Thanks for sticky with important information and messages

In regards to the two problems you mentioned i should investigate further, my swallowing is mostly affected only when eating solids, drinking water usually no issues, with solids i feel as if small parts of the food get stuck in my throat at times and i need to drink water or take another bite in order to bring it down, haven't chocked as yet, also for the saliva issues i feel like there's phlegm at the back of my throat and even on my tongue at times, due to that when i swallow it feels like i cant clear my throat, apart from that as mentioned before i keep coughing alot and keep trying to clear my throat.

Also about the footdrop, i can still move both feet around, walk etc.. but i just feel like my right foot feels a bit light and sometimes when i walk or drive i feel as if its not synced with the rest of my body accompanied with minor weakness and stiffness, i have tried walking on my heels and toes which i can do without issues.

Thanks again for your messages
 

skipper66

Very helpful member
Joined
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SMALL TOWN IN
Hi Lily,
You do need to see a doctor about your issues. Your symptoms aren't ALS related. We aren't qualified to tell you anything more then that. It is also unsafe for you to come to us for answers for your medical problem. We aren't professionals and that is who you need. Not our opinion or diagnosis. Yes, you do have something going on but please take the rest of your questions elsewhere. We said in our opinion No ALS. This is a ALS support group not a doctor's site. If you don't have ALS yourself or aren't supporting someone who does then you don't belong here. You were more then welcome to ask your question. But, it was answered politely so you should be respectful now and move on. Thank you and good luck in finding your answers.
 
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