still the same

[Mand406]

Hi guys,
I still havent gotten to the neuro,it will be about another week,I had felt like my speech was slurred the night before the twitching started,and had bit my tongue a couple of times here and there.My doc says you can have 1 or all symptoms of something,that doesent mean you have "that"..So I understand that it would be VERY rare for me to have it at my age,and hopefully when I get my bloodwork back it will tell something,and I will be taking it one day at a time..It did make me feel better knowing that my doc has had a patient with ALS before,but thanks for all of you being here for me!

 

[Mand406]

FOr Jimercat

So,does it sound like it to you?I has asked before,could yur husband ever feel the twitching in the tongue?Also you guys asked about weakness,I have a funny sensation up my left leg,kind of like whenyou get your reflexes hit,but mild..Also,no weakness but kind of a stiff/numb type thing in a few of my toes..I have had the foot/leg thng and twitching for about 3 years off and on,now the twitching in the inner soes of my feet are constant.I cant wait till my neuro appt,I cant help but be terrified,but thanks again for all of your imputs/support!

 

[brooksea]

Mand,

May I ask the name of your Neurologist?

My husband feels the fasciculations, wherever they may be.

You say you felt like your speech was slurred. In my research about bulbar ALS symptoms, most PALS report that they do not think they are slurring their voice. To this day my husband will respond with this when I tell him "I don't understand what you just said:"

"I sound perfectly normal to me!"
​

Especially in the beginning stages of bulbar symptoms, I would think slurring would be hard to detect. But, Hey like I always say- I'm' no doc.

My husbands bulbar symptoms started with not being able to swallow his saliva and a trip to the ER.

 

[Mand406]

Jimercat....

Thanks so much for your reply!My tongue isnt like the videos I see,it is not constant,its like every few secs./mins or whatever...like a tiny jerk you can see in one spot of my tongue,and my leg,my toes get a little numb on one foot,and my feet twitch a little almost constantly now.and its not weakness I feel in it,its almost like if you get hit in your reflex area,and I notice that behind my ankles look really skinny(may have always been that way)Also,my tongue has scalloped marks,BUT them again I have TMJ and uneven bite..So,although my symptoms are closely related,they seem diff. than most ALS patients I talk to...Im waiting for my referral on a neuro,thats why it will be a week or so....My CMP came back today and they asked that I come in fasting in the morning for another test...IDK what that means!Thanks for your reply and support.Your husband is in better shape than I thought from some of your posts,so thats GREAT,I hope that a cure for this disease will come soon!

 

[Mand406]

Also,once his tongue started twitching,did it ever stop or is it here and there?I thought you had said before that he coulnt feel the fasciculations on his tongue?

 

[olly]

hello all

My understanding is that fasciculations are caused by neurons beginning to lose connection to the muscle when they die and as neurons die neighboring neurons will branch out and try to pick up the slack. This continues until at some point there simply aren't enough neurons to cover the muscle at which point it will begin to weaken and atrophy. That would mean that dependent on the rate of neuron death the time between neuron death,


just saw this thread and needed to throw in my two pennys worth lol.
i agree with zenarchers quote above.
from what i have learnt from others and research als/pls progression can not be stereotyped. we are all different and our bodies react differently to desease.
some peoples bodies can repair damage better than others.
take for instance ms , some ms patients brains are more capable at repairing the myelin sheath than others,why?, no one knows.
as for the different sub types of ms i truly believe it may be the same for als/pls given the different types of progression and prominant symptoms during the course.
in pure pls there is said to be no lmn involvement, however a small number of people with pls have slight atrophy or other lmn signs during life but not enough to classify them as having als,maybe umn dominant als. it is said on autopsy there is always lmn involvement. i have had pls/umn symptoms 9yrs now but 18mths ago it was noticed i had hypotonia in my left lower leg. i have had twitchings here for 8yrs,my left foot was quite bad a while ago and my lower leg/foot is weaker. a few months ago after having weakness in my ankle foot i have noticed atrophy round the ankle and top outer foot.
is this lmn involvement as in als? do i now have umn dominant als? can there be another reason for this? i dont know and at this time not too bothered. but i did at one time get really bad twitchings in my shoulders/upper back that is now weak and has muscle loss and i get shoulder contractures.
my neuro has said it is mnd but can not fit me with definate diagnosed into als/pls as i seem to be somewhere in between.
so back to the begining, you can not stereotype,we are all different and our bodies progress,heal,cope differently. the only way to truly know is on autopsy as my neuro said but by then it wont matter.
take good care
caroline:-D