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nick

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Joined
Aug 28, 2009
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3
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Country
AU
State
ACT
Hello friends,
i am 27 yr old guy who other wise is hale and hearty , exept for the condition i am gonna write about.

it started with a single twitch around my lats 17months back and after a while i had them all over my body every where ...but the ones in my chest region are really bad and constant they are like jolts or thumps and i cant see them( twitches at other places/muscles i can) as they come from deep down , feels as if under my rib cage.

i have been to two neuro's have had an EMG ( in june 09) with numerous blood work....including...thyroid profile, B12, 25 OH vitamin D, calcium, mangnesium, potassium, anti CCP etc.

although my EMG read abnormal results (something to do with wider amplitude and higher action potential) both the neuro's say its as good as normal as it didnt show any spontanious activity or fasciculations & i had a normal clinical exam.

my blood work bewilders me as i am deficient in B12 , D3 & have hypothyroidism...& i know that all these can cause muscle twitching, but what bothers me is that i have been on meds for all these conditions for the past 3 months and cant feel any improvement not even slight.....& when i talk to my neuro's about this they say its gonna take time....now i am really in a fix about acceding to what they are saying or not as it has already been 3 months( one neuro says its my thyroid and the other one equates it to low D3).

i sometimes also feel pain in my muscles along with cramps everytime occururing in my chest....i havent lost any muscle or feel any weakness, but an not get rid of these twitches....god knows whats going on...do let me know what you guys reckon.

thanks-Nick
 

peter57

Distinguished member
Joined
Jun 21, 2009
Messages
429
Reason
DX UMND/PLS
Diagnosis
10/2008
Country
AUS
State
S.A.
Hi Nick,
Sorry you had to find this site.
I cannot give you an opinion on what you might have but when the others that frequent this site wake up (in USA and Canada) i am sure some one will be able to.

I know this wont help you now but hang in there and wait for the rest of the world to catch up to us (it is Friday night in USA)

This is a great forum and lots of very informative people on it.
As you can see i am in Aus, so are a few others on the forum, so you are not alone.
(it took over 3 years of symptons, tests etc. to find out what was wrong with me and i didnt have the twitches you discribe)

cheers and keep your chin up
Peter
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
Sure sounds like BFCS, if you do not have wasting, weakness, and a good clinical exam, clean emg.. does not sound like ALS at all.
 

joelc

Extremely helpful member
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
If it was ALS your first symptom would have been weakness. Twitching means nothing in itself. Hypothyroidism can cause a lot of symptoms and it takes time to get your TSH under control. It took me 2 years. Talk to your doctor and get him/her to be a little more agressive on your medication.
 

nick

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Aug 28, 2009
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3
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Country
AU
State
ACT
thanks a lot for replying....Peter thanks for ur support did;nt expect to find an "aussie" so soon out here.

Hoping...everything you wrote is correct other than the fact that my EMG was not Normal.
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,287
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Loved one DX
Diagnosis
07/2009
Country
US
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ma.
hi nick i cant tell you much ,i am not a doctor but i do know a lot about thyroid and it does affect the musles your thyroid (in america) the most ranges for blood work is ( .45 to 5.5 ) if you are anywhere on this range they will tell you are fine but, you need to push to have the tsh level at as close to 1 as possiable if you just started meds for thyroid its going to take time as the soonest you retest is 6 to 8 weeks for the amount to level out then retest and adjust meds as needed be sure not to go below the .45 or to close to it or very similer symptons will come, the other thing you can do is have them check parathyroid its a blood test that test your calcuim level,become informed and go to thyroid forms and search this informatation yourself and learn best of luck to you
 
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tdamess

Very helpful member
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Jul 29, 2009
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Loved one DX
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ma.
lol if i knew reason for edited would show i would of left it but-the something i forgot was to wish you luck
 

millinero

Active member
Joined
May 14, 2009
Messages
55
Reason
Learn about ALS
Country
IND
State
New Delhi
Nick it seems you are describning what i am going through...but with me its my SUBCLINICAL HYPOTHYROIDISM.....5.68 to be exact.....and i myself have been going through with these fasciculations for the past 1 year or more along with cramps....and ya things have been improving...but i guess it takes time....so hang in there and just believe in GOD.
 

nick

New member
Joined
Aug 28, 2009
Messages
3
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Country
AU
State
ACT
thanks a ton to all of you for your replies,i really do appreciate you guys helping me out here.well i just need to ask that my time span of 17

months with twitching with no clinical weakness and atrophy points away from MND/ALS or does it work out differently for different people

and weakness and atrophy can still be suspected post 17 months of constant fasciculations.


thanks-Nick
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
Some have quoted 2 years without weakness/atrophy as excluding MND. I have also seen 3 year period quoted by a prominent UK neurologist. Seems fairly random to me.

All the best,
 

millinero

Active member
Joined
May 14, 2009
Messages
55
Reason
Learn about ALS
Country
IND
State
New Delhi
well Danijela i dont know bout that 2 or 3 years that u have quoted....coz whatever i have learned,read & asked the time needed to exclude MND is mostly 6 months and to the max 1 year not more than that ....as ALS is about muscle weakness and loosing control of the muscles and not twitching so after 1 year without clinical weakness u really can say its not MND.
as far as those cases you are talking about ...i am not saying that it did'nt happen ....its just that these few caces are EXCEPTIONS ,but with most of the people it generally works within that time span and usually weakness & atrophy precedes twitching.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
Yes, exceptions and usually turn out to be very slow progressors, if they do end up diagnosed with MND. There have been many threads on this topic. D
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,287
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
ma.
nick - try to get doc to get your tsh level down to 1 also if your last test ( let's just say ) is at 3.6 the avage doc will say your fine , or look your right in the middle , .... but, ask him or her to go up 25 mgs and when you retest in 6 to 8 weeks and it did not go below the scale what can it hurt very inportant to get near 1 as possiable when tsh is under 3 you will feel better 1-2 is best for most people you will be suprised what a difference it makes good luck
 
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