How does "chewing troubles" look like?

[Blizna]

Hi, Im 22, twitching for 2+ months in arms, back, ribs, legs, face. No EMG done. A few days I see my chewing muscles are tired quickly - like after chewing week old bread :) I can continue but its not comfortable.. Im very affraid-is this weakness? Im very anxious so I dont know :(

[jimercat]

Blizna,

Find an ALS Clinic, set an appointment, requesting an EMG with the Neuro.

Coming to this board and asking about symptoms will only feed your anxiety! No offense. Call the ALS clinic now, then forget about this and have a good weekend!

[Blizna]

jimercat: There arent any ALS clinic in our country...My psychiatrist told me its due to my mental health (twitching) and people on BFS (benign fasc. syndome) complaint about this "chewing troubles" too.. I would only like to hear how does real chewing muscle weakness look like.
My neuro did a few tests /reflexes, walk, coordination, tongue/ and complete blood test -all OK.

[Jamiet]

Where are you from, i'm sure there is a neruologist that can do an EMG?

[Blizna]

Im ordered to EMG in 2 weeks with my neuro. Does it mean he suspect ALS? Please could anyone reply about the main question about chewing? thank you :(

[jimercat]

Blizna,

chewing difficulty is due to tongue weakness. The tongue is a large organ (we only see part of it) that is used to push food around for chewing and swallowing. As it becomes weaker, a PALS will have trouble moving the food in the mouth and will have to eat more slowly. This in turn is exhausting for all the effort involved and it becomes more difficult to actually swallow the food. Choking and aspiration becomes a danger. Food consistency has to be changed to a softer diet that can be managed easier. Eventually a PEG will have to be inserted, as the PALS will no longer be able to swallow when the tongue muscle becomes useless. While all this is going on, the PALS will also lose the ability to talk and will have to use alternative methods of communication which can prove difficult if the PALS also loses the use of upper limbs.

Thanks to medical science and technology, the PALS is able to live a fulfilling life in spite of these obstacles.

[Blizna]

Thank you for your answer!

Please, could you tell me what about cheeks? I mean the chewing muscles there - I feel them tired after eating even soft food. They are OK in a few seconds again but Im scared, altough many people on BFS (benign fasc. syndrome) describes it. My neuro told me that it could be weakness (but she didnt listen to me carefully, she just heard tired muscles..:( ).

Any help is appreciated!

PS: Im twitching for a few months in totally different places in frequency a 10-20 per hour..I hope its not typical for bulbar ALS, especially in 22 years :( But im so scared. Thank you!

[jimercat]

Blizna,

Can't really answer regarding cheeks. My husband(PALS) has not complained about any facial weakness, although he is losing facial "expression" so I would imagine there is some weakness.

You really need to get an EMG done to get a definitive dx.

[ltr]

Blizna - I have the same trouble you have with weakness of my jaw and the muscles associated with it. This even extends up into my skull. I have not found that PALS have this problem and my muscle biopsy showed myopathy. Even with myopathy my neuro thought it was odd. After I eat, even a bowl of oatmeal, my jaw feels as if I ate a bag of beef jerky!!! It definitely causes me anxiety because of the discomfort and the not knowing why or what's next. Periodically I have trouble with my voice too. I'm sorry I can't help you about it, only to support you saying that I have had it since Feb. and I can still use these muscles (knock on wood!!). Maybe it is an indication that you could have myopathy too.

[Blizna]

Thank you for your replies!

Itr: Im "glad" Im not alone and still without ALS. Do you twitch too? If so, how often, how long?
Yes it makes me anxious too, Im neurotic and when Im stressed, my twitching icnreases dramatically (that was why my doc doesnt think it could be ALS). Im scared to death of EMG, I considering cancel the apt and just wait..I know I have no weakness, Im hypochondriac and my twitching started with tremor during stressful time for me, but I dont want to know I had ALS too :(

[ltr]

Yes, I twitch a lot. Particularly after exercise and then well I am resting, but lately it is pretty constant. The arch of my right foot went through 3-4 days of constant twitching, some of which I could not feel, but if anyone looked my foot was moving in a very constant motion. I experienced weakness and pretty bad cramping with this, but the neuro did not seem concerned. That has settled down now, so as long as I don't get atrophy or further weakness of that area, I guess it was benign (at least I'm hoping). Try not to get stressed and make your symptoms worse. Are you taking something for anxiety?

[jimercat]

Blizna,

Do NOT cancel the EMG!!! You really need to rule things out. Testing is the way to do it. Also have you had any nerve conduction studies?

Although you may not have ALS you still need to know what is causing your symptoms. It could be something very treatable.

You are very young to have ALS, but it is not impossible.

Can you tell us what county you are in? We may be able to help you find an ALS clinic, or another member of this forum may be from the same area and can recommended a doc.

[Blizna]

Itr: You seems to have the same as I have..probably (hopefully) BFS.. Yes Im taking Rivotril (Klonopin) for anxiety and Serlift (antidepressive). Before twitching I had tremor due to many stressful things happened.

Jimercat: I live in Czech republic, there is one center for ALS, but only for DXd people.

I know its possible to have ALS in 22, but I still hope that I cant be so rare, so very very very very rare to have ALS that presents at first with twitches with no other symptoms. But I know, everything is possible :(

[snflower]

Hello my name is Linda . Im not sure how to post a new post on here ...so ill try this.
Im 42 this friday and i have been having some problems with weekness and pain in my arm and legs and chewing ...feels like when i go up stairs its like i walk a mile ...and when i chew food the something. A few months ago i had a pinched nerv thay said in my right shoulder. and to this day it still is week. My fathers sister had als i was just wondering if this is what it could be ..or does this sound like something i should worry about. I am going to make an appointment.
thank you
Linda

[jimercat]

flower,

if you have weakness and trouble with stairs and chewing, then you really need to see an ALS specialist since you have ALS in your family, at the very least for peace of mind. Have you noticed any fasciculations? You could have any number of problems...

I pray you do not have this. Please let us know about your appointment and the outcome.

[snflower]

Thank you so much for replying im very worried my husband thinks its in my head but im making an appoinment today i pray husbands right but i just know something is not right.
Linda

[guwainengle]

Here is a thought about facial weakness--- Get your lips real dry--- kinda sticky dry-- close your mouth and then open it slowly. Try this a few times-- If it seems like one side of your lips are slower to open... This possibly would indicate weakness in that side of your facial muscle. Just a thought-- I have checked this myself and notice it on my left side- the side I have twitching.

G

[Pythia]

Dear Linda,

We are in similar circumstances; my symptoms are almost identical. Hang in there and wait until the doctor has done all the tests they can do. I know it is very hard, but try to think positively… or at least try not to think of it at all!

I wonder how often people start to notice symptoms in their shoulder and arm that is first diagnosed as a pinched nerve?

[Pythia]

First my GP said neuropathy; then go to a chiropracter who made the headaches and tingling worse; after a year of wrangling with the insurance company have x-rays and MRIs...the radiologist thinks its disk compression - off to the neurosurgeon; well no he says, it looks muscular in nature; better see a neurologist... hmmm... the neurologist is puzzled .....

I wish I could go directly to an ALS center ... my insurance would never cover it.

[jimercat]

Pythia,

The MDA has funds set aside to pay for visits to the ALS Clinic if you are not able to afford it, or don't have insurance. It would be worth calling the clinic and discussing this with the social worker, explaining that your insurance will not approve a visit.

Just a thought.

[ltr]

CJ - that is how I got to the ALS Clinic at Strong. I called the MDA in Binghamton and they immediately setup the appointment. Pythia, I believe that is the local MDA you would call also. I think you may be a little confused between ALS Clinic and MDA. The best clinics are certified by the MDA and they will help you. 607-723-7431

[Pythia]

Thanks for the information! I might be jumping the gun on an ALS clinic or a MDA - I have not even had my first EMG yet. My thoughts have been racing and very scattered since my doctors visit last week....panic is a good word!

I feel foolish worrying about money at such a time, but I can't help it. My husband and I just baught a house and frankly have been living beyond our means. If my diagnosis is something that limits my ability to work, we could be in big trouble.

I would feel a lot better with some things settled, like a will, an advance health directive, life insurance and long-term disability insurance. My goal this week is to have many of these researched if not in place. Hopefully I will feel better with these out of the way; I hope it also helps keep my mind busy enough that I don't monitor my every shake and twitch!

Thanks so much to everyone!
Pythia

[ltr]

Many of us here have taken care of those exact things as soon as we became ill and trust me......it definitely brings great relief!