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mac53

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Feb 9, 2007
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36
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PALS
Country
US
State
indiana
City
indianapolis
Hi,
I'm a 53/m I'm married 2 children. Last October I went to the Doctor with a lot of Canker Soars in the back of my throat. Never had such a break out.. one or two, but this was like 12 or more. He gave me a viral medication and they went away. I also started having loose stools, lost about 12 lbs.. and then came extreme bouts of fatique.. and headaches at the same time. I also had a fever of and on. The fatigue and headaches lasted about a month and a half. Not all the time it would just come on me. During this time I developed pin and needles in my right foot with a numbness and a weakness in my left thumb only when the fatigue would hit. This continued and the fatquie and headaches stopped. Then I begin to wake up at night with my hands asleep. I would have to pry my two right fingers apart. I've had a CBC.. normal... tested for EBV came back positive.. at sometime in my life I was exposed to it. I've developed a weakness in my arms.. and hard to hold a pin and write at length. Also my muscle tighten under neath my chin.. and develope a headache. When I stick my tongue way out my muscles quiver on my check if i hold it out for a little bit and my tongue guivers when I stick it way out and hold if for a while. Also I've had a white patch on the back of my tongue. I still have trouble with my bowels.. just not right. Is this a sign of ALS? Or is this some type of virus... ? My numbness has left my right foot and it just seems weak. I ran a few miles.. but and haven't had any fatguie. Thanks for answering!
 
I was hoping someone would answer me

Hoping someone would answer me... please.. need some help.
thank you
 
Hi Mac. Sorry you had to come looking for answers but hopefully we can be of help. I've sent you a private message as well. You might want to take a look at the topic Numbness and tingling. I don't want to scare you but there are quite a few diseases that have numbness and weakness out there.
AL.
 
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Good morning Mac - I hope your day goes better than yesterday. This is a great forum for all manner of information, tips on coping, practical advice on how to manage. Sometimes members get "quiet" for a few hours, and when that happens I always hope it is due to weekend activities and such. Bear with us, and folks will jump in with all sorts of support. Cindy
 
Thank you

Thanks Cindy,

I've just been hard. I have had so many differnt syptoms. My biggest thing now is under my jaw feels so tight and the side of my jaws. It's hard to form words at times. I still have some numbness in hands at night, but where this started in my right foot with numbness feels better... Strange. It's still stiff. I had muscle twiches in my left leg while resting. .. but ran two miles yesterday.. twitches last night and this morning.. I don't have the fatquie like I use to have a couple of months back.. It hit me hard with a headache then would go away. Thanks for your help.

Mac
 
I read somewhere-probably on this forum, that when you see a doc you should focus on your worst symptoms and not confuse the issue by listing every little thing. That said, I was told my one neurologist that he appreciated the fact that I informed myself before my visit.

I think he said that since I was having trouble with appetite, and when he asked if I was having trouble eating I said, of course, yes. Then I saw the concern and remembered that bulbar patients have trouble chewing and swallowing so I amended my statement to explain that I didn't FEEL like eating but did NOT have trouble chewing.

Sometimes the best we can do is to learn all we can and then try to communicate our symptoms as best we can. Good luck and visit often to keep us up to date. Cindy
 
Thanks CindyM

Thanks so much Cindy! I guess that since I've been healthy most of my life and now having all these symptoms.. it's hard to stay focused on just one. At least most of them have gone from the onset of the early stuff. It is also strange.. my right foot where the numbness started is not longer numb and tingling. It's mainly my chin muscles and right hand feeling week. I have a deep ache muscle in my left hamstring when I bend. Thanks so much for your help. I'm putting off the EMG.. I want to make sure all my insurance is up to day.. thanks again! Mac:-D
 
Twitching

Hi again, Sorry to bother all of you. Today I'm having twiching in my right leg. I put my shoe on and it seems harder to walk.. feels numb. I shoveld snow this morning and could tell my right foot wanted to drag some. I had a cramp in the toes of my right foot this morning as well Still waiting to get insurance in before they do an EMG.. if I can hold out. Thanks for answering. Mac
 
This is a very scary time as you wait DX and try to learn everythign you might need to know AND make plans for a future that holds- what? Sometimes it can be overwhelming. The folks here have lots of good tips and we are always ready to listen. The best advice is the hardest: try to relax. Easier said than done, I admit. Wishing you the best, Cindy
 
Thank you Cindy

Yes, it has been touch. My daughter is getting married in April and I keep wondering if I will be able to be there for her. I've had so many things going on in my body. I can feel my uvula in the aternoon touching my tongue. My toes cramped in my right foot this morning and it felt numb and weak. Then sometimes my right foot feels ok? My jaw aches and under neath my chin is tight. I have felt some twiching in both legs. Just keep wondering is this ALS. The virus thing i had gong on in Nov. and Dec. with the extreme bouts of fatguie and some night sweats and fever.. make me wonder what this stuff is? Thanks again Cindy.. if you have any thought, please let me know.
Mac
 
Jaw and chin hurts

Another question, my jaw and chin ache.. along with my hands falling asleep at night... my chin aches so bad it makes my teeth hurt.. are all these signs of ALS? I'm having so many symptoms.. my foot goes numb.. falls asleep when during the day.. have some muscle twitches in legs... I'm trying to wait on life insurance before I go to the Doctor for more testings.. all this started after a virus 4 months ago.. now it bothers me daily in some form.. thanks for your answers... Mac
 
Mac

I have bulbar als dig in april 06. In reply to hands falling
asleep at night mine do to sometimes. Als doctor said
it was probably arithis, said als didnt work that way. But
who nos everybody is dif. from what I have been reading.
It is scary to wake up and your hand numb.

Davis 07
 
Thanks Davis

Yeah my hands fall asleep and joints swell on right hand.. my toes are cramping.. and I haven't had a diagnosed yet.. trying to wait out for life insurance. My right foot goes numb.. but haven't lost any strength yet.. having muscle twitches in legs.. so I'm not for sure.. I guess everyone hopes it's not ALS... thanks for responding.. Mac
 
joint swelling

Mac, Joint swelling is not something I've heard about with als and some of your other symptoms don't match either so hang in there until they figure it out. I used to have a lot of numbness, but don't anymore. Numbness and tingling are not usually consistent with als, though I have seen some cases of it here on the site. In my case I have other nerve damage besides the involvement of motor neurons and 'why' no one [doctors] seems to know. Take Care, Barry
 
Thanks Barry

Some of the most encouraging people are on this forum. I've been through so many emotions since Oct. I'm hoping to find a diagnosed soon. Thank you for your support, you guy and girls are great! Mac
 
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