ALS on and off?

[danaldinger]

To all:
I have been veiwing this forum for some time now. I have had many of the symptoms that leads me to belive I have ALS. Starting in Dec 07 I start to have a strange feeling in my left cheek. It was not numb but more like the last few minutes of when your cheek is waking up from a novicane shot. Over the last months thing have gotten worse. The new symptoms include swallowing difficulties, the feeling of having to breath hard to catch my breath, feeling fullness in my mouth that makes it seem hard to speak, cramps in my legs, shaking in my arms, cramps and pain in my feet, hand and forearm falling asleep at night. I have been to a neuro and he did a check of my strenght and he said no to ALS. I feel he did not even check for bulbar ALS. The question I have is I will have these symptoms for a week or two and then they will disappear for a day or two or even a week or two. Each time they come back it seems a little worse. So can ALS symptoms come and go like that? Thank you!

[Erica]

ALS is a progressive disease, it's not on and off.

[BarryG]

Not only is there no on and off or come and go there is usually no numbness either. It is also very rare to have limb and bulbar symptoms at the beginning and what you are describing doesnt sound like bulbar anyway. Bulbar onset ALS starts with slurred speech caused by tongue and lip atrophy and then progresses to swallowing problems.

So add it all up and it doesn't sound like ALS to me, especially since your doctor said no.

[danaldinger]

Thank you to both of youthat answered. It is strange how what ever it is is affecting me. Talk about up and down. I went a week of 'feeling' normal and it hits me again. My symptoms usually are a feeling of having to breath hard to get a full breath yet I can always catch my breat, a feeling that I have to swallow a couple of times to get food down, and i feel like my tounge is wider then normal and have to move it to speak. I also will have my hands or arms shake and they feel weak yet I have not had a problem of dropping things or lifting things.
I am also very confussed about Lyme. I actually went to a lyme specialist and the first time he said no to lyme the second time he said yes. I did have several ticks and a rash but the rash was not where the tick bites were. I am trying to get to the Mayo clinic so they can do testing. My wife thinks it is mental more then anything. I sure hope to find an answer to this puzzle becuase it has been going on 4 years now. Once again thank you for your responses.

[Al]

I think if you had ALS for 4 years you'd be a lot worse than you describe. It doesn't come and go. You'd be getting steadily worse. The Mayo may be the way to go and they might come up with some MND but I doubt it will be ALS. Have a Merry Christmas.

AL.