hi all in mew from uk, please help if you can?

[maryroseuk]

Hi all, just wondering if anyone can help or has had similer problems.. im am a 25yr old woman with a 1 year old son, next month i will have had problems for 1 yr!

Here goes -- fasics of the feet, calfs, hands -(new 1 last few months and i cant see them i can just feel, them does anyone else get this?)) and the tounge (horrible!) the calfs ive had 4 a yr and the tounge almost a year (but getting worse) the feet about 4 months and the hands most recently..

2 emgs both normal - last one november. my question is am i in the clear even though i keep getting new areas starting 2 twitch, i cant even feel the twitches on my feet they just happen... its very frightining, as somthing is always on the go twitching away... its very hard to believe that there is nothing wrong... i hope other people here can agree with me i feel uncomfatable all the time its horrible... is there anything i can do.. the thought of this 4ever is a nasty one :-(

Sorry 4 going on really i am.

Any input will be very very gratefull
:|
Mary xxxx

 

[olly]

hi maryrose

welcome to the forum, my name is caroline and i'm in westyorkshire.
other than fassics ,what other signs/symptoms do you have?
eg-----hyper active reflexes,spasms,fatigue,weakness.
if emg was ok they are probably benign.:-D

 

[maryroseuk]

Hiya im in kent, nope no other symptoms at all somtimes i imagine that my hand is weak if you get what im saying... somtimes it feels like i cant swallow either but i think it might be mind over matter... how about u what test have u had?

M x

 

[olly]

iv'e had every test you can think of lol. i have umn/lmn - signs/symptoms.
im waiting for emg for a definate diagnosed of als.
you may have bfs-benign fassiculation syndrome.
try not to stress out too much about it you sound healthy enough.
all the best
caroline:-D

 

[maryroseuk]

thank you for being nice, i really hope u dont mind me asking you this, but what signs symptoms do you have and what was your first? how old r u also, im 25 im leas 2 believe this is quite young for als?

xx

 

[olly]

hi

i have umn-----hypereflexia,spasms,clonus,myoclonus,balance problems
lmn-----flaccidity/hypotonicity,progressive limb girdle muscle weakness.
also started with chewing problems and minor swallowing/speach problems,wieght loss.
and i hope theres no more lol.:-D

 

[olly]

sorry

im 40yrs old going on 80

 

[maryroseuk]

hi thanks for your reply, let me know what happens i am really sorry for your news
do you get the fasics too?

Does anyone else have any imput on my signs symptoms?

Many thanks xxxxx

 

[olly]

sorry, yes i do. not allover just in certain muscles. i have started with them in face and jaw,this is a concern for me as i have developed progrssive weakness here and my speach and especially chewing has got worse leading to wieght loss
best wishes
caroline:-D

 

[Blizna]

Maryroseuk: You are fine... At first - if twitches arent visible its very good, since that is typicall for many non life-threatable conditions.
I have visible twitches, normal EMG and Im living with it for more than 8 months! Now I can be almos sure its not ALS but I fully understand your feelings - I went through real hell this summer, those nights of anxiety and despair I will never forget.

With 2 clean EMG, age of 25, twitches in areas where normal people twitch very often (calves etc). and mainly with twitches wihout weakness you can be pretty sure its not ALS.

PS: This sounds to me like (sorry, dont know the english name of the condition) - "Latent tetania" (pathological lack of Mg that has to be threated for months until improvement is seen)or third (and neurological) phase of Lyme disease. You can request tests for Lyme or Chlamydia (here again sorry for spelling) in your doctors office, since they often forget to test those.