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CB1977

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Hello everyone-

I wanted to give an update as my symptoms have got worse. I still have pain in my neck muscles front and sides and the worst pain is under my jaw line. It feels like something is swollen inside but my GP said my nodes were normal. The ache under my jawline gets worse at the end of the day as does my neck pain. My tongue has indents along the edges which are certainly getting much worse. The indents do match up with my teeth but they are no doubt much worse (deeper and bigger) then they were 10 days ago. I also have some tightness in my chest and still have the muscle twitching, especially at night. I have a appt. with OSU on the 13th of Oct. My Gp put me on Cymbalta for Fibro and it is not doing much at all. This is getting really scary, I cant function mornally anymore. I have been sick since the end of June/beginning of July. I am not slurring words but the aching does get worse when I talk. What else could this be? The pain is the worst, is that something that is usual with the onset of certain ALS?

CB in Ohio
 

ZenArcher

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Ohio, who's in Ohio oh I know, Sen. George Voinovich (R) who voted no to S. 3297. Have you sent him an email requesting that he vote Yes?

Pain is not a symptom of ALS. There may be pain later on as muscles weaken, tendons tighten and joints strain. Before you say this has been going on for a long time the answer is no. You say you have indents in your tongue. Let me explain something, there are days I sound like I downed a case of beer in an hour as bad as I slur and my tongue looks fine.

I won't tell you one way or the other. From reading your posts in the past you will continue to believe what you want. The choice now is yours. Worry and stress and cause your body further harm or deal with it as it comes and see what the professionals have to say.
 

CB1977

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ZenArcher- thanks for your reply. What is S. 3297? I will be happy to send him an email.

Jimmercat- Thanks for you reply as well. I am not sure if it could be MPS. I dont have pain in my face but the left side of my face feels tight in the morning. The tendons in the left side of my neck are so tight that when I turn my head to the right,it actually pulls at the jaw. I felt pretty good when I woke up (like most days) but after walking around for a while at the Zoo with my wife my neck muscles and my tonge muscles (at the base in my throat) start to hurt. Its almost like they are getting to weak to hold my head up. I was just wondering if the pain could be some fatigue in my neck and tonge due to weakening or atrophy? I am going to ask the doctor about TMJ and MPS....the muscle twitching is the one symptom that seems to just not fit into anything but ALS. If I didnt have that in combination with these other issues, I probably wouldnt even be thinking ALS. This "wait and see what develops" thing is not in my nature so it is very difficult for me.

CB in OHIO
 

ZenArcher

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S. 3297 is a group of bills one of which is the ALS Registry act. See my post in the General Discussion section titled Action Alert - For Every US citizen on this board.
 

Kevinski

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Don't Borrow trouble

I was officially Dx with als bulbar onset ,I would not say you have classic symptoms of als.Obviously something is going on.Go see a good neurologist and try not to worry about things until you get the facts from the specialists,good luck. kevin.
 

awieleba

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that is funny that you say that CJ, the other day at my moms, I Felt like my face/jaw/ear area was in a vice! I didnt know how to articulate the pain! I could not open my mouth to talk, hard to believe! It was super intense for hours and then waxed and waned for a week and now comes and go's.

CB~

I know what you mean about pain. One of the first things for me was pain in all my joints, just aching all over. So I am trying to believe my doc's and go with the 'autoimmune, even though we cant catch in blood test thing'. I did have a baby, I was very sick after, I was stressed, so I will wait it out.

I hope your neck is ok. did you get an mri? MY neck is worse after being on the computer and my hands!
 

CB1977

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Just wanted to give an update- I have an appt on Oct 13th with Ohio States neurology muscle disorders unit/clinic on Oct 13th. My symptoms are about the same. I am also going to my dentist to get some input on why over the last month the scalloped edges on my tongue have got so bad and the white coating that is always present (even after I brush my teeth). My neck has been bothering me for a while, and I noticed that where the left trap meets the base of my neck is softer and different looking on the left (which has been a bothersome area). Hopefully this is not atrophy. Does anyone know if bulbar onset would cause atrophy in the neck? The muscle twitching has not changed, still just as bad. My MRI came back on my head-normal, neck- normal, C-spine- normal. I guess that is good, but truthfully I was hoping it would show something....anything. Does anyone know how good OSU (Ohio State) is? I want to go to the best place available. Thanks to all-

CB in Ohio
 

awieleba

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I know what you mean about finding something abnormal on mri, only here would you find that-LOL

I get the thick coating (white) on my tongue. AND it has come and gone for over 15 yrs! I think it is related to virus and thrush is related to that. I have tested + to alot of viruses, so I think that is the cause. I dont think one person with als has ever said that bulbar started with a white tongue, you must listen to that. YOu are on this forum for that reason---thier wisdom and own battle. To gain knowledge from them---listen. IF You are NOT slurring, you can eat and talk---it is not bulbar. and I have almost all that you say, and I dont think bulbar. I even had my tongue twitch a few times....

take care
 

BethU

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Hi, CB ... the dentist is the one to see about the white coating on your tongue. Have you Googled "white coating on tongue" yet? There are about 160,000 hits. If you want to really freak yourself out, call up the one from the Mayo Clinic. Absolutely disgusting! You will be sorry you asked! :lol: But nothing threatening or serious.

There are several very simple explanations for a white coating, as well as viruses. Dehydration, mouth breathing, etc., etc. Your dentist will help you. It's not a neurological symptom.

BethU
 

CB1977

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Beth- do you have pain or a wierd feeling under your jaw like where the base of your tongue is? I have an ache and my tongue is like a wild animal when I stick it out as far as I can. It really have some serious movement?

April- I dont think I can bring myself to google white coating on tongue :) I can only imagine what will pop up then I will have to join another forum and I just dont think I have the time :)

Thanks for your responses ladies! Have a great night!

CB in Ohio
 

BethU

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Hi CB, no, I've never had any aches in my jaws, or underneath, or anywhere around my mouth, jaws or tongue.

Also, your statement that your tongue is like a wild animal ... I assume you mean it's moving rapidly all around ... is the opposite of what happens with bulbar ALS.

In bulbar, your tongue becomes weaker and weaker, and slows down more and more. Eventually, you cannot move it, period. I picture it as eventually just lying useless in the bottom of your mouth like a slab of uncooked bacon.

This is where the ALS bulbar speech problem (disarthria) comes from ... you can't move your tongue into the correct positions to enunciate speech ... and you can't move it fast at all. At this point (2 1/2+ years), I cannot touch the left corner of my mouth with my tongue. Cannot get anywhere near touching the inside of my left cheek with my tongue. It just doesn't go left. I can still move it to the right, but verrrrrrrrrry slowly, and I can stick it out a bit, downward, but not upward.

Whatever is going on with you, it doesn't sound like bulbar onset to me.

BethU
 

awakinggiant

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Hello CB1977

I am actually interested in a update for you. It seems as the bulbar symptoms you expierience are quite similar to mine. Soar throat on my left side and hoarseness is the main addition as well as global cramping and random burning sensations. I have different body are evidence of myopathy of some sort (including twitching) but the neck/facial/cranial pain is by far the most bothersome.

Kris
 

CB1977

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Kris- I just went to an ear, nose, throat specialist. I have my 4th neuro appt on the 15th of this month. The ENT said that he did not see any atrophy when he looked in my throat. The ENT put me on steroids and a antiviral mediaction. He said sometimes certain viruses can get into your nervous system and wreak havoc? At this point I will do anything to feel better so I said lets try it. He said whatever is wrong with me is neurological but what is causing it is up for debate. So, thats is where I am at. I will certainly give updates whenever I get them. Thanks, hope you feel better soon

CB
 

lulapaul78

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Just curious...did your symptoms improved after being on the anti-viral drugs?
 
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