still the same

[Peg B]

Thank you Cindy. I have a book called Gratitude. The object was to write down 5 things everyday that one was grateful for. I think it is a helpful idea as it helps to change the focus of thoughts. Again thank you for your kind words. Sincerely, Peg

 

[Peg B]

Hi,

Cindy and Caroline, Thank you for your wishes re: my husband.

I have a book called Gratitude. The object is to write down 5 things everyday that one is grateful for. I think it is a helpful idea as it helps to change the focus of thoughts.

Cindy also thank you for your kind words. Sincerely, Peg

 

[CindyM]

And thank you, Peg, for your courageous reminder that we can change our thoughts. I see so many posts from people who feel they cannot stop worrying about the future, I am sure it helps to know that people with MND can, and do, decide to let go and get on with life.

 

[Cornelia]

I am sorry Peg, I never really thanked you for your kind words. In the middle of what
you must be going through. I am sorry for venting about my cousin, it was misplacedCornelia

 

[Peg B]

Hi Corneila,

You are most gracious. No need to apologize. I think Cindy said it best. We can change our thoughts and they truely are easier than anything else to change.

Take Good Care and Happy Easter/Spring. Sincerely, Peg

 

[Mand406]

Als?

Hi,
I have a question for those of you familiar with the symptoms of ALS.I am a 27 year old female,who has had a minor problem with my left foot for about 3 years.It tingles when I rub it with pressure,my toes feel sort of numb alot and I twitch in it and both of my calves quite often.My REAL concern is I have been having alot of twitching here and there around my mouth for a month or so,but a week ago,I woke up to my tongue twitching!It has yet to stop,I can see and feel these,and they are just as one user here described her husbands tongue twitching.It feels like a pull and release type thing.But,my tongue is very strong.The night before it started,I did feel that my speech was sort of "thick",but that went away.I can move my tongue and swallow fine.It also feels as if the muscle in the side that oes it is knoted up a little bit.Does anyone have any input on this,as I am scared to death!
Thanks!

 

[CindyM]

Hi Mand- we prpbably can't tell you for sure since none of us are doctors. Have youseen a neurologist? Yhere are about a hundred different diseases that ahve these kind of symptoms, and most of them are treatable. good luck and let us know how it goes! Cindy

 

[Mand406]

Thanks

Thanks for the response,I am trying to get a neuro appt. now.Also,when I stick out my tongue,it has ripple like edges on both sides,isnt that atrophy?So there ae other things that could cause constant tongue twitch,and twitches throughout the body?Thanks again for your response Cindy...Do you have Als?

 

[Peg B]

Hi Mand,

Cindy is right. None of us can diagnose for you. I was DX with ALS, Oct 2006. But it looks more like I have multifocal motor neuropathy MMN. There are so many things most of us never heard of until we or a loved one gets symptoms. Please keep yourself as calm as possible and see what the doctors say. Best wishes and God's blessings. Peg

 

[Mand406]

Hi,

Hi Peg,how old were you when you were daignosed?Thank you for your response!
Also,just wondering is it commom toget ALS in your twenties?
Thanks!

 

[brooksea]

It is very UNcommon to get ALS in your twenties, but not unheard of.

 

[Mand406]

Hi,

I noticed you said your husbands tongue was JUST like mine is,but I can feel it...I have had twiching off and on for 3 years in my feet that is constant now for weeks,my tongue straight for 2 weeks....Is your husbands constant,always there?Has he ever felt any of the twitching?Also,can he move his tongue around good?Now today,my finger /hand has started and wont stop.I got my blood drawn yesterday.Im really worried because I even have the scalloped look to my tongue.My doc somehow thinks that is not ALS....could this really be anything else?Thanks you guys for all your kind words!

 

[wamjr1002]

I noticed you said your husbands tongue was JUST like mine is,but I can feel it...I have had twiching off and on for 3 years in my feet that is constant now for weeks,my tongue straight for 2 weeks....Is your husbands constant,always there?Has he ever felt any of the twitching?Also,can he move his tongue around good?Now today,my finger /hand has started and wont stop.I got my blood drawn yesterday.Im really worried because I even have the scalloped look to my tongue.My doc somehow thinks that is not ALS....could this really be anything else?Thanks you guys for all your kind words!

Those ripples in your tongue could be from anything, probably some kind of nutrient deficiency but could also just be normal. Are you biting your tongue when you eat? difficulty swallowing? slurred speech?

 

[brooksea]

Mand,

Have you seen a Neuro yet? Most GP's are not familiar with ALS enough to diagnosed.

 

[Peg B]

Hi Mand,

As a matter of fact most Neurologists have not dealt with anyone with ALS. It is super extremely rare - MMN is rarer still and hits men 3/1 as much as women. To answer your question I was 58 when I was DX with ALS, but was 53 when I first noticed symptoms. Two neurologists said it was not ALS or MS. That was in 2002 and 2003, and I did not see a neurologist again until I could not move one finger at all and an orthopedic surgeon, a hand specialist, sent me to a neurologist who did have experience with ALS. That was in 2006. He sent me to the specialists in ALS and she said possibly MMN, but after a year and a half they are not totally sure which one I have, but my progression is very slow.

ALS is extremely more rare in the 20s. Please note: my youngest sister died almost instantly at age 22 in a car accident. It taught me to live at least a semester at a time and to try to do "one day at a time," thinking. I was 28 when she died. I have outlived my oldest sister by 2 years so far. She had 12 years living with cancer. There is no time in life to worry.

What has the neurologist said? Please live it while you got it. Take good care. Peg