bulblar question

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zac111

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hey guys have another question for anyone that can help.i have started haveing a burning sensation in the tip and top of my tounge and i was wondering if tyhis might be a syntom of als.
 

CindyM

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Hi Zac-we're hoping it is something other than ALS. Aren't you due for an emg next week? Let's hope you have something other than ALS. Cindy
 

zac111

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yes on the eighth i was just wondering because i can swallow fod and drink just fine but when it comes to just regular swallowing feels like im swallowing a lump are something then my tounge started to burn some.just kind of weird but the whole swallowing thing is getting worse not better guess ill just have t6o wait and see.
 

Jamiet

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Zac,

I have that, and a bad case. My tongue hurts like hell. Its now, atrophied, quivers and twitches all the time. All i know, is the edges, hurt, almost like a bad burning. I keep it curled up all the time to make it feel better.

We have alot in common....I've got the ear ringing....i'm loosing muscle (no clinical weakness), my feet are shrinking, i have twitches that are 24/7 and driving me crazy.

I feel like i'm on an island, and you guys here are the only ones there with me. NO body listens to me outside you guys, isn't that ludicrous. My poor wife, i've told her i feel i'm on this island, and it upsets her, but how has anyone else handled that?

I've asked her to do some reseach, about ALS, so she can understand what's got me aggrivated, worried, nervous, etc etc. She will not do any research, all she's going off of is that the ALS Clinic lady told her this is 110% not ALS. So, i say, explain the difficulty breathing, explain the twitches 24/7, explain the tongue, the calfes taht one is smaller, left arm, right pect, etc etc.......

Zac, when you attend the clinic, make sure you have your questions written. DONT FORGET! Do not walk ouf that place, wiht one question in your head. I would start jotting them down now, as you think of them.

The best of luck to you, the EMG won't be bad, they don't really hurt that bad and the ALS Clinic EMG techs, do that all day, so they are good at it and use very very small needles, you almost cannot feel the needle it's so small.

Take Care,

Jamie
 

zac111

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thanks im going to do that i know the feeling everyone thinks im crazy to.id feel better if i could just talk right all the time runs dates off all the time....lol
 

CindyM

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Hi Jamie-almost any disease that leaves us feeling vulnerable will make us feel like we are on an island! I've actually reduced my need for support from my family and friends since it was too devastating for them to hear about my concerns. Now I give them just enough information to keep them from any sort of ultimate shock and get my main support from all of you! Cindy
 

Jamiet

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Cindy,

It seems we are all in the same boat. It's hard, not to have anyones "shoudler" to lean on, except on-line buddies. we can't be online all the time. It specifically hard, when your spouse cannot understand. I feel for her.

I'm mean, complain and gripe alot........ Yes...i'm a typical male...lol

She's a great woman, i couldn't ask for better. She's put up with me for 10 years....so she's got to be good.

Your spot on about telling too much, even my mom freaks when i start blabbering off about how i feel. They can't handle it, but my question to my wife, is.... how do you think i feel. I've told her, which is again, prob. mean....that she doesn't have to live with this....She can get away from it. yes, that was selfish, but you all know what i mean. WE cannot step away from it for 10 mintues.

so, we'll continue to support each other here because we understand one another and understand what the other is going thru.

rgds,

jamie
 

puzzled36

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Any advice?

Hello,

I'm a 36 y/o female, mom of 3, nurse. Hx of hypothalmus tumor stable in size for 6 years, no other medical problems. About 15 months ago started having difficulty initiating a swallow, occasional slurring of one or two words, arm numbness and headache. I ignored these symptoms and attributed everything to my work schedule, lack of sleep. six months ago, began having tightening feeling in my throat, increased difficulty with swallow, and noticed my shoes were too big. the next month the twitches started. I had an EMG done of my arm - normal. Then I started having cramps and noticed that I have lost muscle in my chin and biceps. I have had all the standard tests done at Washington University NeuroMuscular Division in St. Louis. Muscle biopsy shows generalized atrophy, regular EMG of body and tongue was done 2 months ago, showed nothing. Single fiber showed increased jitter and I was put on Mestinon for possible Myasthenia - its not working. Having difficulty in hands ( typing, grabbing things) feel stiff. Question - have any of you had normal EMG's at an ALS center and been told by leading neuromuscular doc "no ALS", only to be diagnosed later? He admits something is going on, not sure what. Also positive for rheumatoid factor and asialo-GM1 antibodies. Any thoughts on what else I could have? Thanks, Gina
 

CindyM

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Hi Gina-You are not the first in the medical profession to seek advice. Last fall we had an intern physician wondering what could be going on with him but I think his docs decided it was Benign fasciculations. Some folks are able to get answers from their ALS clinic right away and others spend a long time waiting and testing. Sorry there are no quick answers but even if we were all Doctors I doubt there woudl be easy answers! this place is a great way to arm yourself with information, though. Fire away with any questions and feel free to use the search function on this fourm to get a few answers as well. Cindy
 

Al

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Hi Gina. One good thing is that you are being seen at a top notch facility. GWU has a very good reputation in the neuro field.
AL.
 

puzzled36

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Thanks

yeah, I know that I'm seeing some of the best doc's. My doc has written several of the articles on ALS, myopathies, etc on Emedicine and works under one of the best neuromuscular docs in the country, it's just frustrating not to know what is going on! I'm scared witless! He states that if I had it, it would have shown on my EMG yet he wants to see me back in a few months for another EMG!? If its ruled out, why do they keep wanting to repeat it? Another question - has any one heard of facial tremor ( whole face at once) being a sign of ALS? Thanks Gina
 

Jamiet

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Gina,

I've got alot of similarities to you, read my former posts. I don't have the postivie rhum and g-1, which, to me, is a good sign taht your problems are autoimmune rather than neuromuscular.

I've got the shoes that are too big, twitches, and all the other stuff. I've been with this since Aug of last year, still undiag, have biopsy in June, expect that results won't be favorable.

How is your tongue?

Take care

Rgds,

jamie
 

puzzled36

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Jamie

I have read your posts - we do have a lot in common. My tongue has a deep groove (didnt have before) and some cut marks at the side. I dont really have twitches in my tongue (that I feel anyway) but I wake up with a very dry spot in the center of it in the same area that I feel like doesnt move well and causes my speech to slur. I have atrophy in my left chin, a dent.
 

Jamiet

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And i'm 32, so i feel your pain....we're too young for this crap.

And my ALS specalist also admits something is going on.....She's told me she's 100% certain this is not ALS....which is good, but, what the hell is going on.

I'm not as convinced as her, but she sees ALS all day long. i've got a good feeling i'll be in one of those....HMMM categories....we don't konw what's wrong, but your in trouble...that's for sure...lol

take care

rgds,

jamie
 

ltr

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Jamie - I am having a muscle biopsy in June too. Actually, it is on the 6th, when is yours? I am hoping this will finally give some answers. I saw the infect. dis. doc today and he explained why he didn't consider my lyme positive, so I am back to having.....adrenal tumor, no wait it's MS, no wait it's fibromyalgia, no wait it's chronic fatigue syndrome, no wait it's Isaac's, no wait it's MG, no wait.........! Anyway, I certainly will be thinking of you when I have my biopsy. Good luck. Leslie
 
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