could it be bulbar

[frankp]

Hello, good folks and thankyou for taking time too help those of us in limbo or the worried well.My concerns started in 2011 with lip spasms or twitches that i ignored.A few months later in the spring my girlfriend commented my legs were smaller in size and i began to start twitching in my calf muscles.Agian, i didnt really worry about it and went on with my life.

Towards the end of 2011, i had the unpleasant experience of black eyed peas coming out of my nose after eating.This was strange and i looked up nasal regurgitation and of course als and some other nasty things popped up as a possibility.I also noticed that my overall muscle size had diminished, as a matter of fact i did nt fill out my jeans like i used too. i also began to fill a pressure in my chest when i would eat or drink.So i made an appointment with the baylor college of medicine nueromuscular specialist.

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Fast forward to may 2012 for my testing.I had an emg performed by a nuero that specialises in emgs.Then i had a consultation with a dr haradti who performed some clinical tests on me, examined my tongue,reflexes and such. He dismissed me saying that i didnt have any evidence of a nueromuscular disease.I didnt tell him my concerns about als because i didnt want him to think i was crazy.

Its been 5 months since that day and im beginning to worry that since i have developed this hoarse and nasal sounding voice the last month and my swallowing has become alittle worse, also my emotions have been in full alert this last few months with me feeling like i want to cry or over the smallest stuff.Anything sentimental makes me want to cry.Im still playing golf, tennis, and lifting weights but my body is shrinking in size.[INDENT Is it possible that my probelms are all upper moter related or since they didnt do an emg of my bulbar region that i could be suffering from early bulbar that just hasnt gotten bad enough to diagnose clinically.In january of 2013 it ll be two years since my odd symptoms began.If it is als would this imply a slow developing form of mnd, maybe a cousin of als or something .Im very frustrated and wish i could get some answers too these issues.Did any bulbar people have muscle loss in their limbs and have a clean emg and a normal exam but still get diagnosed with als or some other mnd My weight has pretty much remained the same but its all fat that im replacing the muscle loss with.Thanks for reading my post.​

 

[Grateful]

Hi,

I think that you have answered your own question; if you had bulbar onset then you would not have had one episode of nasal regurgitation a year ago. You would have continued to regurgitate food ever since then because ALS does not come and go. It comes and stays.

You may not be aware of this but your doctors are; they have conducted an array of tests and found no neuromuscular cause for your symptoms. Anxiety produces very real changes in your body, including weight loss, and emotional fragility is common in people suffering from anxiety and depression.

But there may be other reasons for your symptoms so I think it would help if you consulted a general practioner who can look at the big picture and see where to go from there, and I wish you the best of luck!

 

[bigguy]

Twitching (fasciculation) and muscles getting smaller (atrophy) are lower motor neuron symptoms.

If you've only ever had one episode of nasal regurgitation that hasn't happened again since 2011, it's likely that that's just a freak occurrence with no relation to ALS. Remember that ALS symptoms are fairly rapidly progressive, they don't come and go.

Who told you that you have a hoarse and nasal voice? Do you think you have it? Or are other people telling you that you sound weird? Say "ahhh" and look at your soft palate in the mirror; does it rise symmetrically and vertically? if so, then it's doubtful that you could have actual nasality. I freaked out and thought that my soft palate was rising asymmetrically and went to an ENT, but he said it was normal.

From what I have heard, if you had an EMG and the EMG was done on the atrophied muscles, abnormalities would definitely have been picked up. If abnormalities were not picked up, then it's not likely that you are experiencing myogenic or neurogenic atrophy. I also didn't see you mention weakness at all in your complaints: generally in ALS, weakness comes first, then fasciculation, and then atrophy. I don't think it's possible to experience noticeable atrophy without noticeable weakness, especially not in ALS.

Some people with bulbar involvement get pseudobulbar affect, which is similar to what you are describing, and occurs as uncontrollable sobbing or laughing in response to things that me be only a little humorous or sad. If you aren't crying at the slightest provocation, then it sounds more like stress to me. It appears that you can control your emotions, even though they may be running high as you said. If you cannot, and indeed are bursting into tears or laughter inappropriately, then you should probably go see the doctor again. This is just my opinion, I have not been diagnosed with anything and perhaps someone who actually has pseudobulbar affect can clarify how theirs began.

 

[Tokahfang]

Upper motor neuron problems and muscle shrinkage don't go together, and you wouldn't be in "early" any kind of ALS if you're coming up on the two year mark. So take those two worries out of your mind.

Have you ever heard of benign fasciculation syndrome? Calf twitches are a very classical start to it, and it causes both anxiety and a host of passing, minor neurological symptoms. These symptoms aren't faked, they aren't imaginary, but they are not signs of permanent damage either, and they do usually fade with time.

 

[frankp]

Thanks for the replys, bigguy im not sure if my soft palate is rising correctly or not but it does appear to be.Maybe, a visit an ent doctor could clarify that.Along with my nasal, hoarse voice, im constantly trying to clear drianage from my throat, and i have a lump feeling in my throat.I wasnt having any voice issues when i went to see the specialist and didnt have my emg done in the bulbar region.I should ve requested it, all he did was some funky tests with my tongue and cheeks.I know im not imagining these issues.I feel like the incredible shrinking man, as my muscles shrink in size.So bulbar or umn disease doesnt cause your muscles to shrink.

 

[Luke]

Thanks for the replys, bigguy im not sure if my soft palate is rising correctly or not but it does appear to be.Maybe, a visit an ent doctor could clarify that.Along with my nasal, hoarse voice, im constantly trying to clear drianage from my throat, and i have a lump feeling in my throat.I wasnt having any voice issues when i went to see the specialist and didnt have my emg done in the bulbar region.I should ve requested it, all he did was some funky tests with my tongue and cheeks.I know im not imagining these issues.I feel like the incredible shrinking man, as my muscles shrink in size.So bulbar or umn disease doesnt cause your muscles to shrink.

Trust me -- you do not want needles stuck in your face, neck and tongue. The doctor didn't do an EMG of your bulbar muscles because he obviously doesn't feel there's any reason for it. You should take great comfort in this. We had a forum member a few weeks ago post a similar set of symptoms and she found out it was acid reflux. Given your hoarseness, frequent need to clear the throat, etc., that would seem like a likely possibility. ALS would absolutely be the least likely explanation for your symptoms, so put it out of your mind. Good luck.

 

[laurel]

Frank don't rule out some gastric reflux problems. My husband has CIDP with atrophy and loss of function in arm and leg. I got very paranoid when he started having weak voice, coughing and choking on saliva as he did have a query of A L S back in 2007. Turns out he has gastric reflux and if he takes meds for it those voice and choking issues do not happen. Try some over the counter meds for reflux and see if it helps.

 

[Concearnedyoungfemale]

Yea , they told me Luke, that I have acid reflux , it's no fun,

 

[Luke]

Concearnedyoungfemale, you're who I was referring to.

 

[Concearnedyoungfemale]

Hey Luke! I knew that was you : )