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BoxersRule

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Hey again..
I know many of you have read my story and repeat that I do not have ALS and to be happy I have been declared ALS free after a CLEAN EMG of atleast 10 different muscles and 14-18 sticks and insertions. I felt it was thorough and it was at about 3 months into my fasciculations. At the time my reflexes were 3 plus symmetrical but I was a FLAKE and FREAKING OUT and was told symmetrical and anxiety she expected brisk. I also had 5 and 5 strength test. Passed with flying colors etc. To this day I have no "true" clinical weakness. Sure some days something may "feel weak" but it doesnt stop me from doing anything. Sometimes my hands cramp but during pregnancy I gained carpal tunnel and was told it could take months after delivery to resolve. When I compare limbs to limbs I see no difference.
Ok so I should be fine and not worry right? Well. I read stories on here and I see soo many conflicting things . Yes I guess ALS has many of faces. 11 months into twitching I have been told that if it was ALS I would have very progressive symptoms that would be noticeable to not only me but others. I am still able to lift my daughter with either arm in her car seat and do it w/out a problem (sure its heavy, but I do it.) I cook, clean, move things, fold laundry all that stuff. Many of you know I have hyperchondria but its hard not to when you read stories on here of people having clean emg's but they still FEAR they have ALS. It makes me think ok, so why should I relax?
This widespread twitching is soooo annoying but its not handicapping not yet atleast. On my EMG my neuro found one fasciculation and said "See there is a fascic which appeared alone with no other issues or problems" she said totally clean. BFS! So why cant others on here believe their test? Then I read where a poster had WIDESPREAD fasciculations and 7 emg's and clean ones at that but later diagnosed with als and she was my age. I reported that to a als specialist and he said no way. Just not possible UNLESS the person only exhibited UMN signs which is picked up by examination brisk reflexes etc.
It wasn't just one SPECIALIST that said that it was a couple. They said they had NEVER seen that before. Yes this is the internet, do we believe everything we read? No! Do I, Yes!
Most of the people on here that TRULY have ALS have fell into the catergory of which I have been told happens and the emg's were dirty and there were not BLANKS in between no matter HOW the als started. Then you have skeptical posts which ruin my day.
I feel at heart I am ok. I hate and I hope I am not bothering you guys. I know you have better things to do. I am seeking help mentally. It was suggested by my neuro and I took it to heart because she was VERY worried of my well being.
I guess I am just trying to figure out the open ends with this thing of CLEAN EMGS later led to ALS when it contradics EVERYTHING I've been told by numerous neuro's , specialists etc. BUT keep in mind I am not referring to people w/ CLEAN EMG's with UMN signs.

DeeDee
 

Al

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DeeDee, get away from here. Far away. Don't come back unless something bad happens 2 years from now. Believe me. You will end up in serious therapy if you don't quit this self destructive behavior. Enjoy your baby and life. You'll drive yourself nuts carrying on this way. You're starting to sound like you did when you first came here.

AL.
 

BoxersRule

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Al

I hope you are right. It saddens me I cannot be on this forum without totally breaking down. I just pick up my 4 month old and squeeze and hold her and pray. I know this is in my head I know your right AL. I know that I am fine. Its just I come here thinking I will find something or read something to make me feel better but I leave sick to my stomach and scared.
Ive already lost my husband. You are soo sooo right Al. I will have mental turmoil if I keep going down this road. I am sorry I posted I was just in a time of tears and wishing I could just feel normal again and not think bad every twitch.
Im sorry I apologize I know I sound crazy.

With Love, DeeDee
 

BethU

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DeeDee ... it really sounds like you are having serious anxiety problems that have nothing to do with ALS, since your neuro and the experts on this forum have already told you not to worry about ALS.

You say you come to the forum to find something to make you feel better, and then you read posts from other anxious people who are refusing to accept their doctor's findings, and you get even more depressed and scared. So the solution, as Al said, is to not come here.

Please talk to your doctor (your general practioner) about this, and see if you should have some counseling, or perhaps some anti-anxiety meds. Perhaps your hormones are not yet back to norma after having the baby. I'm sure you are suffering greatly from your anxiety. Get some help so you can enjoy these precious months with your baby.

Good luck.
 

BoxersRule

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Al and others- it worked before

I hate I have no self control that I have to do this to myself but agian I am going to ask to be banned from this forum. I dont have self control to know when to stop coming back and that is awful.....especially with all I am going through right now with new baby. BethU and Al is right- the expert neurologist and the experts on here tell me nothing like ALS...soo I dont have it.
I am sorry I have to do this, I so want to be support and comfort to everyone eles but I just dont have it in me. As a hospice nurse you would think I could do that huh? Well sadly I cant.

Hugs to everyone of you and I love you all and I am sorry if I focus on myself and I am self centered. I never was that way til I gathered health anxiety. I apologize greatly.

Al, if you would..ban me again. I just cant handle it. I was a lot better before I started lurking around again. Ironically enough I drank a gallon of water behind my klonapin this time and my tongue is normal / again. I talk fine. My doctor tells me all the time I have every sign of dehydration and not enough calcium ions.

I will still keep you in my prayers.

Al if you will- Ban me... Please as I ask.

Take care everyone I WILL be fine. I got past it before and I KNOW I can do it again.

With LOVE and BEST INTIONIONS.
DeeDee
 

Al

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OK DeeDee I'll do as you ask. It will stop you from posting but don't be here reading. It won't help.

AL.
 

Blizna

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Well, you are refering to one girl here, who had told us she got diagnosed of ALS after 7 clean EMG in quite short time.. I have asked my neuro too and he said the same as yours: impossible. He even doubted some insurance would pay 7 EMG in one year...
I totally agree that on the Internet we totally dont know if somebody is really person who he said he is.

PS: I know a case of some sick **** who came to BFS site after years and spread fear that he was DX with ALS after years of twitching. Fortunately he was tracked down.
 

broodjeaapspeciaal

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Well, you are refering to one girl here, who had told us she got diagnosed of ALS after 7 clean EMG in quite short time.. I have asked my neuro too and he said the same as yours: impossible. He even doubted some insurance would pay 7 EMG in one year...
I totally agree that on the Internet we totally dont know if somebody is really person who he said he is.

PS: I know a case of some sick **** who came to BFS site after years and spread fear that he was DX with ALS after years of twitching. Fortunately he was tracked down.

Aye, the moderator of the BFS website said this when i asked him about the cases of BFS turning into ALS ;

1. was a person who self-diagnosed himself.. but turned out to have BFS afterall
2. Was a sick person who got BFS, then created another account with a fake email and said he was that one case of BFS that turned into ALS to spread fear. He was tracked down and banned from the forums.
 

Blizna

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Yes, thats probably the case Im talking about.
I know people from cancer related forums who are facing those sick **** too, so why we should believe some extra rare and very strange stories here?
If that person here told us she had 7 clean EMG, every neuro I have talked about was absolute sure its not possible and said, those people have some kind of mental disorder - they want to attention, compassion and to be taken seriously.
If that case was true, it would be reported and published, it would be the very first one, breaking known rules..thats why I dont believe it.
 

patricia1

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I had 3 clean EMGs at the begining becauseI had Bulbar Palsy.I later found out it was a nice way of saying ALS. The emgs became bad after 5 years when my symptoms moved to my limbs. But Bulbar palsy is almost always ALS.

Pat
 

Ervd

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I had 3 clean EMGs at the begining becauseI had Bulbar Palsy.I later found out it was a nice way of saying ALS. The emgs became bad after 5 years when my symptoms moved to my limbs. But Bulbar palsy is almost always ALS.

Pat

did you have fascikulations or weaknesses in limbs when you were on EMG investigation (i mean the 3 clean EMG)
 
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