Just a few questions

[notme]

It would be unlikely for ALS to affect all areas at the same time--sudden onset conditions are, as a rule, viral in nature--but there are things like Gillian Barre and Myesthenia Gravis that can have a rather sudden onset.

What did your doctor say was 'abnormal' in the EMG? An NCV is often abnormal in the arms--carpal tunnel and the like. Not so much with the EMG unless you have accompanying nerve damage.

 

[AMC123]

It would be unlikely for ALS to affect all areas at the same time--sudden onset conditions are, as a rule, viral in nature--but there are things like Gillian Barre and Myesthenia Gravis that can have a rather sudden onset.

What did your doctor say was 'abnormal' in the EMG? An NCV is often abnormal in the arms--carpal tunnel and the like. Not so much with the EMG unless you have accompanying nerve damage.

He said there had been a nerve in my thigh which had repaired itself. *shrug*
But now I've recently been reading about eustachian tube dysfunction and that it's common in ALS. Ive had this issue with my ear being 'plugged' since Feb and no one can tell me what it is.....

Grateful, as far as my symptoms go, I'll go over it again:

Muscle pain/fatigue--like when I go up my stairs, my muscles in my thighs mainly, get fatigued easily as if I have been working out a lot. The muscles feel hot and tired, and my ankles feel stiff.

Same with arms, but mainly my left.

I don't know about atrophy at this time as I know everyone's bod is not perfectly symmetrical, but my left leg and hand are smaller. However, I have no real weakness in regards to functioning.

I get full body tremors, and sometimes just tremors in one part.

Difficulty breathing, although my FVC is good. However, I've heard theyre not all that reliable. *shrug*

Now I'm getting abdominal pain and such.

And I get pre charlie horse cramps in my calves, but they never really form.

 

[TedH5]

He said there had been a nerve in my thigh which had repaired itself. *shrug*
But now I've recently been reading about eustachian tube dysfunction and that it's common in ALS. Ive had this issue with my ear being 'plugged' since Feb and no one can tell me what it is.....


Difficulty breathing, although my FVC is good. However, I've heard theyre not all that reliable. *shrug*

Where are you "reading" and "hearing" these things?

I will state again that it seems to me you are lumping everthing together and calling it a symptom of ALS.

I am not a Dr but to my knowledge a plugged ear and abdominal pain are not related to ALS.

Follow up with your Dr's but it seems like you are trying to put square pegs in a round hole.

 

[AMC123]

Where are you "reading" and "hearing" these things?

I will state again that it seems to me you are lumping everthing together and calling it a symptom of ALS.

I am not a Dr but to my knowledge a plugged ear and abdominal pain are not related to ALS.

Follow up with your Dr's but it seems like you are trying to put square pegs in a round hole.

You're right, I am trying to fit it in all together. I read about the ear thing on ALSA, on the little online booklet thingy. I also read about it from other patients with ALS, but I cant say which site because I think it's against the rules.

I don't know why it's harder to believe that I have multiple things wrong at once that are common, as opposed to it being ONE uncommon thing. I guess because it all kinda' came on at once.

But I understand what you mean. When I first got my BFS diagnosed, I was cool and moved on for a while. But then I read about someone (on that other site) who had two clean emg's and was diagnosed with BFS and later found out he was misdiagnosed once he saw a specials (just a reg. neuro diagnosed him); so that kinda' flipped me out a bit. I surely hope you're right. I have to keep repeating to myself that I saw one of the specialists. It works for a while, but when the symptoms come back, then I freak again. I will admit that most of my stuff does come & go, which I know is not typical in ALS with exception of fasics. I guess I'll find out everything for sure in time.

Thanks for your help.

 

[AMC123]

I must have put something in my first response that wasn't allowed again because it didn't post.

I read about it from an organization, I guess I'll say. I dont think I can say which maybe? But it was reliable source, for sure (the ear thingy is what I'm talking about). As far as the other stuff, I heard from other pALS.

But you're right, I am lumping everything all in together--I will not deny that. I guess for some reason, it's easier for me to believe I have one uncommong thing rather than a bunch of common stuff all at once. Maybe because it all came at the same time. I don't know. I have good days when I don't worry and lately more bad ones. I was cool for a while until I someone with ALS told me about how they were misdiagnosed with BFS and later found out he was misdiagnosed and had ALS. He had two clean EMGs, however, they weren't done by a specialist as mine were. So I need to keep reminding myself of who did my EMG and how well known he is in the field. Thanks for your help, guys and I appreciate all of you taking the time out to answer my questions.

 

[rose]

My advice is to go to an ENT and have the issues going on in your mouth (and Eustachian tubes) evaluated. Even a fairly general ENT will be able to recognize if things aren't right in there.

If this type of specialist thinks things are off, they will be able to know which way to send you as far as diagnostic testing goes. There are causes ranging from you just having a physical anatomical anomaly that you didn't notice before, to cancer and other causes with more serious implications.

You said your mri and emg was normal. If your doctors are agreeing with you that functionally things inside your mouth are NOT normal, you should also insist on an MRI of your brain stem. A general MRI of your head is not specific enough to look at such a small area that houses the nerves that control the muscles in your mouth.

If you are still having difficulties and the EMG scheduled in August is normal, you might want to ask about having a single fiber EMG performed. It is more sensitive, is not used to diagnose ALS, but is used to diagnose Myasthenia Gravis, and will pick up on sub clinical motor neruonopathies. (motor function abnormalities that are a "side effect" of a primary cause that is not motor neuron disease itself)

Good luck to you, let us know what you find out.

 

[AMC123]

Those are some seriously helpful suggestions. I would have never known that about the MRI or the other type of EMG! Thank you!

 

[rose]

I've got to get off of the computer for most of the remainder of this evening, but, feel free to PM me if you have other questions that I might be able to help with.

 

[Grateful]

You know, you hear a lot of things, particularly for someone who claims to have hearing problems.

Oddly enough, the things you hear are either not to be found in any reputable medical journal or are incredibly rare. For example, there is the princely total of 2 references to ALS causing problems with eustachian tubes on Pubmed, and it is acknowledged that these are likely to be a result of paralysis. Anyone going to a neurologist claiming that their blocked eustachian tube was an early symptom of ALS would be politely referred to a psychiatrist as well as an ENT specialist.

And anyone claiming that muscle pain and fatigue are also symptoms of ALS clearly knows nothing about the disease; it's all in the stickies which you claim to have read but clearly haven't.

At some point in your life you are going to have to face up to the fact that no matter how hard you try nobody here is stupid enough to believe that we know better than one of the best ALS specialists in the country, and that if one of the best ALS specialists in the country has told you that you do not have ALS then you don't have ALS.

By this point I do sympathise, but it's with the gp who is going to have to deal with your latest fantasies, not you...

 

[AMC123]

I don't understand why you INSIST on being rude to me and trying to argue when I'm not being rude to you. Why not just ignore me? How about this--I'LL just ignore YOU for ME. Everyone else is capable of being cordial and nice and helpful. You? Not so much. Therefore, I'm done responding to anything you have to say. Call it a fantasy, call it whatever. I don't care.

 

[Grateful]

Once again, I notice that you make claims in your posts and yet refuse to back them up when you are challenged on them.

You want me to stop pointing out that you are making untruthful claims; the easiest way to accomplish that is by you stopping making untruthful claims in the first place.

As for everyone else being a model of sweetness and light towards you I suspect that Toto might differ on that one...

 

[rose]

Please remember the main mission of this forum is to lend moral support and share information. Its not a debate forum, nor should anyone be made to feel like they're on trial here.

For the good of this forum family as a whole, any member who has nothing constructive to contribute should just not contribute.

Thanks

 

[HelenL]

Thank you Rose.... as Al would say... "Play Nice or leave the sandbox"

 

[patricia1]

I started in the bulbar region .I started with slurred speech lump in throat and scalloped tongue .No water up nose
Pat

 

[AMC123]

Thanks for the info, Pat. Much appreciated.

And thank you ladies, for being so kind. I would LOVE to keep this conversation civil as well. Nothing constructive in arguing.