Status
Not open for further replies.

comfortable with ALS

Distinguished member
Joined
Sep 24, 2007
Messages
111
Reason
Other
Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
Hey guys just woke up from a crazy night...my left hand feels weeker it always falls asleep on me and i wont even be doing anything then it takes like 10 min to get it back to normal...this is only my left hand and it hurts so bad....my tounge countinues to twitch daily and the fasiculations are more and more pronounced. Yes ive had 5 emgs within 7 months but i guess we cant rely on these you basically have to be limping in the docs office before anything is noted. I love that my docs say no als but i hate that my symptoms are getting worse. I hate going through this pregnant iam so miserable and i no the baby is to iam trying to stay positive...i thought it was going to be bfs but i guess my docs are wrong. Als says no sensory problems but it seems as though a lot of people on here have that sensory problem. I have no noted atrophy as of yet but i think there is a dent in my tounge. I was also told by als specialist you cant feel your tounge twitch but i can feel mine, so can other people. And my whole vision thing i dont care i no thats not normal extra protein in my eyes 24 7 isnt als a protein disease i dont think the docs think i have als because of my age but there are people my age who have it. There is a girl right now who is 29 who cant even hold her baby she just had its so sad and the docs said if she would have been in her 60s her diagnosed would have come sooner. Helpkeri.com. Thanks for listening Jenny
 

bala80

Member
Joined
Oct 12, 2007
Messages
26
Reason
Learn about ALS
Country
AUS
State
Vic
City
Melbourne
Hi Jenny,
I guess I am in a similar boat as yourself, my symptoms started with diffuse twitching 3 months ago and have had 2 negative EMGs (mind you I was on clonazepam at the time and the neuros thought this wasn't an issue) during this time. The twitching has not stopped for a second and my leg muscles (especially calves) are 1/2 the size they were 3 months ago. I'm only 27 and have such a fat progressive form of this, and I had sensory burning sensations in my feet as well at the start, which the neuro's pointed away from ALS for. Like you, because I didn't limp in there and because I passed their physical, they thought it was all anxiety-related. I think EMG's are a shocking test to assess denervation, and I feel as if I was diagnosed earlier I would have been better for it - and saved the emotional rollercoaster me and my family have gone through - "all tests normal - you're ok!" - numerous times. Just because you can push against their hand you have no weakness? That is a stupid measure of muscle weakness.

I think in you're case, 7 months of twitching with no significant atrophy - I don't think the tongue thing is atrophy - is a good sign definitely. Even if you're tongue had been twitching for 7 months - I would think that by now you would have significant speech issues which isn't the case. I really hope things do not progress for you as they have for me - a word of advice - be assertive and tell them everything - don't make the mistake I did and was apprehensive at the start as I was afraid to hear the truth. All the best.
 

puzzled36

Active member
Joined
Feb 27, 2007
Messages
54
Reason
Learn about ALS
Country
US
State
MO
City
St. Louis
bala, when were you diagnosed and what did the docs say regarding your prior negative EMG's?

my best to you.
Gina
 

comfortable with ALS

Distinguished member
Joined
Sep 24, 2007
Messages
111
Reason
Other
Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
thanks

for your responses i appreciate those any other pals have any ideas? jenny
 

bala80

Member
Joined
Oct 12, 2007
Messages
26
Reason
Learn about ALS
Country
AUS
State
Vic
City
Melbourne
I was diagnosed on the 15th of Nov, after pleading with my neuro to repeat the EMG. I don't think the EMG should even be done if there all the clinical boxes of MND are ticked. I had widespread faciculations, atrophy, muscle pain and weakness - what's the EMG for in this case - they didn't need tis to diagnose this illness in the past. I have the additional emotional burden of knowing that I brought this on myself.

The following may seem strange and weird but it's true and I live with this every second. In March of this year, I took a herbal parasite cleanse for 30 days called humaworm that I came across on the web. Against the advice of my doctors, I tried this thinking that maybe my eye floaters were due to parasites and not debris from the eye - as I had seen some curezone threads on this. I ended up taking them in a combination of naivety and misleading advice from the people there. I thought it could do no harm given they are all natural herbs - boy was I wrong. If I had done my research properly I would have found that there was no way my floaters were in fact worms - and made the now fatal error of listening to what turned out to be a quack cattle farmer masquerading as a parasite specialist on curezone selling herbal products - instead of my doctors. I bought and took the herbs under my own judgement by law, so I have no one to blame but myself at the end of the day. Herbs are not regulated by FDA, anyone can sell them and are not responsble for any ill effects. Soon after this, my MND symptoms started and have steamrolled ever since.

So I have aggressive ALS/MND compunded with the mental torture that I did this to myself, and I could have prevented this from happening by being less gullible. Does this punishment fit the crime? Well I can't turn back time, and have nothing to look forward to but a horrible death at the age of 27. This explains my postings on taking my own life in the euthanasia thread - if you have effectively killed yourself already and thrown away your life and dreams in the most horrible way by a lack of judgement - why not end it earlier and save further suffering and mental torture. I am not a religious person, and if I was, how could any God justify this... This is what my life has been reduced to and I hav no-one to blame, I took poison herbs. I have only months left so I cannot take health measures to slow this down, and I do not have long enough to fly the flag for the ALS cause. I try every minute to find a positive from this but I can't, I have thrown away everything and have left my loving parents without their first born and only son. This is not really a cry for sympathy, this is all self-inflicted and I have to live and die with it. I just feel for my loving parents and younger sister who has her own health issues, they didn't deserve this and I break down with shame every time I look them in the face.
 

bala80

Member
Joined
Oct 12, 2007
Messages
26
Reason
Learn about ALS
Country
AUS
State
Vic
City
Melbourne
oh and regarding the prior negative emgs, they had me on valium for percieved anxiety whilst they were done - the morons didn't think that it would effect the EMG results - they are muscle relaxants for pete's sake - how could they not see this?! To top off things, I was stuffed around by neuros too. Unless you see an ALS specialist, there is really no point in expecting quality treatment from normal neuros. My advice is see an ALS specialist, and if you have a negative EMG (and are not on any meds - especially muscle relaxants) then you are in the clear and go out and live your life....
 

Steve100

Distinguished member
Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
State
Wales
City
Cardiff
Sorry to hear of your diagnosis but if its any consolation, I wouldn't have thought that you brought it on yourself - you could have damage to your motor neurones for a while before symptoms present themselves. Its probably a coincidence.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I agree. The disease probably eats away in tiny and unforseen ways until all of a sudden it starts to steamroll. Since the medical community cannot say what causes it or how to cure it I doubt anything anybody does or does not do can start or stop it. Sorry to burst your bubble but you may not be in control of as mcuch as you think you are, LOL. :-D Cindy
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Bala,
Sorry about your diagnosed, please don't blame yourself.
I have read the same thing, you have ALS long before you see any signs of it.
 

peanut78

Active member
Joined
Sep 27, 2007
Messages
56
Reason
Learn about ALS
Country
US
State
nc
City
nc
If that is true, that you have ALS long before you see symptoms, how come the first EMG doesn't always pick up changes?
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Because there is no test for ALS. An emg can show what has gone wrong after a certain amount of damage but then the docs have to figure out what causes the damage. In my case, I had my right ulner nerve operated on 4 years ago. So they expect to see "dirty" emg's in that arm.
 
Status
Not open for further replies.
Top