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BoxersRule

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Hi there,
I see everyone is still kicking and chatting it up here. I as well when I thought I was in impending doom. I am sure you all recall my story. I will refresh. Don't worry I will make it short.....

31 months ago I had widespread random twitching- it went away- UNFORTUNATELY it came BACK..3 months into my pregnancy. Started same as last..left thigh then over night BOOM all over. Those that know me know I totally FREAKED OUT! I sought out a Neurologist. Cheif of Neurology and expert EMG'er. I got lucky no wait. The sad part is...when I called to make an appt. I was in SUCH hysterics that the nurse put me on hold so she could ask the doc if she could just see me today because she was worried about my mental stability and being pregnant.

p.s. During this time I lost my husband to a divorce due to my insecure anxiety and health worries. What I feel is real but he couldnt take my sulking every day. So this was and is serious to me.

That day I went in...and they did a random guess you call it..physical strength test etc. I passed with flying colors....reflexes normal...equal you know the game. No EMG. My reassurance lasted about a month..I called again- begging can atleast your NP see me and do another neuro exam. I got in a few days later. Unbeknowing (is that even a word) to me...they set me up for a EMG. They did not tell me until they came to get me for it. The Neuro said I would NOT get past this until I had a EMG and she could explain and show me my muscle activity etc. (the neuro actually did this on her lunch break for me)

That exam room never felt so cold and that rumbling of the EMG machine is a sound I will never forget and I think of every time I hear my computer fan come on lol... Well 14 sticks and ten muscles were tested. I am not sure how long it took it felt like eternity. I know that she did a few insertions in the same spot however I dont know how to explain that but she told me it was like a eye ball on the needle and it was just looking in a different direction each time. Even in the same spot. Anyhow...EMG showed nothing..no psw's no fibs, nothing abnormal just one FASICULATION that was caused when she had me flex my calve muscle. She said...look @ the monitor. The fasciculation was clean with no waves blah blah blah....

Anyhow she delcared I had BFS and NO ALS and sent me on my way. I asked about her creddibility and experience with ALS and she said she had more than her share of patients she had diagnosed in her years of neurology. She also showed me her card and she was a teacher of EMG- ok whatever you call those people but it said EXPERT ELECTROMAMOGRAPHER something like that.. lol

Well I had the baby July 2, 2008. Beautiful baby girl. Amberlyn Victoria Graves. I had a horrrrrrrid delivery. Induction, 20 plus hours of labor and 3 hours of pushing and EMERGENCY C section with Epi running OUT and I had to have a spinal block *saddle block* unfortunately some how my WHOLE body ended up going numb..It was scary I couldnt feel my chest but it was all worth it. Fast forward..I am still 28 years old and I still have the stupid twitching going on. I have no weakness I have fully recovered from my c section ofcourse I am still sore but nothing manifested from that.

Lately I keep thinking I am speaking funny. I feel like I am going to get "STUCK" on my words but I never do. I am able to spit, cough, YELL, tent my cheeks, move my tongue back n forth fastly talk fast etc . Its just when I think before I speak I freak out like its going to not work.

Also, I experienced a swollen tongue during pregnancy due to dehydration. WOW you know that scared the HELL out of me when I was talking funny.

I worry about my tongue now but when I look in the mirror I see a fat pink tongue. I am no doctor so I dont know what atrophy looks like but I dont see any thing unusual. I hope I am just freaking myself out again.

Help me get off this train before it takes off again. I am really at one with myself and I HAD put ALS aside. Now Im back to this "tongue" thing. I occasionally get a ZAP or tingly feeling on it but I spoke to the doctor and she said that could be from my medication CLONAPIN which is a side effect listed on the medicine info.

Yall get me off this bus please.

I still think of you guys and pray for you every day.

With Love, DeeDee:mrgreen:
 
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KANSASTOM

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Congratulations
 

Al

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Hate to say it but, TOLD YOU SO! Actually, didn't hate to say it. Go away, be happy. Don't think bad thoughts.

AL.
 

lostinlouisville

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Stop the train

First of all Congratulations on your baby girl

Second: Sorry about your husband

Third: Stop this right now, I read some of your post when I first joined and my heart went out to you, but I never told you how sorry I was you were going through this, I really hate that you worry like you do. I do want to say it is tragic to loose a husband because of the reasons you stated but I am a foster mom with the state of Ky. and I am truly worried if you don't calm down and get this under control you may loose your child, believe me I have seen things that seem small get out of hand and the next thing you know a good parent is fighting the courts trying to convince them they should have their child. I don't think your crazy, I just worry about how you come across to people. I say this with all the love and sincere compassion in the world.
 

jennibf

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Congratulations on the new baby! You have been blessed, you have no weakness and you have been declared free of ALS. Personally I think if I were in your shoes I would go see a psychiatrist, or a counselor at the least. You've lost your husband over this.

If my neuro tells me I do not have ALS, I will be PARTYING and if I continue to suspect that I do then I will be begging for an appointment with a psychiatrist. Of course if my symptoms progressed to more weakness and/or atrophy I would get another opinion but my gosh, you've been declared fine!

Unfortunately I have weakness and was told I really, really needed an EMG/NCV. They've exhausted the other tests. I would give up anything but my family right now to be told that I do not have a degenerative and progressive disease. However, I am holding on to the hope of some kind of disc from today's MRI on my lower spine.

Enjoy your baby. She needs her mommy. Get help for yourself so you can be the best mother to her possible!

BTW, there is a lady in the my doctor's office who has had BFS for years.
 

Spacemonkehh

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Hate to say it but, TOLD YOU SO! Actually, didn't hate to say it. Go away, be happy. Don't think bad thoughts.

AL.


Indeed; BFS creates so much anxiety that it destroys relationships. Some people even lost their jobs to it.. Go out and live.. or use your experience to help others.

On side note though; try to fix whats broken. Still doubting if you dont have ALS? WORK on your anxiety. Get a psychologist. I've seen kids growing up between 2 family's and it pains my heart.. try to fix that too if you know what i mean.
 

Spacemonkehh

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First of all Congratulations on your baby girl

Second: Sorry about your husband

Third: Stop this right now, I read some of your post when I first joined and my heart went out to you, but I never told you how sorry I was you were going through this, I really hate that you worry like you do. I do want to say it is tragic to loose a husband because of the reasons you stated but I am a foster mom with the state of Ky. and I am truly worried if you don't calm down and get this under control you may loose your child, believe me I have seen things that seem small get out of hand and the next thing you know a good parent is fighting the courts trying to convince them they should have their child. I don't think your crazy, I just worry about how you come across to people. I say this with all the love and sincere compassion in the world.

My thoughts exacly.. extreme anxiety drives people INSANE. Look at what the somatoform disorder ( hypochondria ) already caused you. I'm sure this door is closed by 50% now because of the clean EMG. All you need to do now is closing it by overcoming your anxiety. That might be a long road and it will take some time.. ( im walking the same path now ) but im sure we'll both get there.
 

BoxersRule

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ty all

thanks you space...seriously anxiety is a rough one to conquer but it can happen :)
 

Spacemonkehh

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thanks you space...seriously anxiety is a rough one to conquer but it can happen :)

Aye.. Especially when i read some stories here about ALS starting with fasciculations in one area. But then i again, i passed my neuro's clinical exam and i can still walk on my toes / heels after 2.5 month of twitching so im probaly fine. Its the rushes of anxiety (which i would describe as a sudden 'adrenalin' or fear rush when my symptoms get worse ) that makes me doubt about my BFS diagnosis. Oh, and your definatly not alone when thinking about bulbar ALS. Im having a lump in my throat aswell and my tongue feels funny when talking. Whenever i ask someone about my voice they all look weird at me.

I'm thinking about getting some council from a psychologist. Maybe he can give me some tips to beat hypochondria.
 

patricia1

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You are sooooo lucky and yes klonipin can cause your tongue to feel funny


PLEASE STOP WORRING. ITS NOT ALS!

ENJOY THAT BABY
Pat
 

awieleba

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Hi dee dee

I can understand your anxiety. if you have had this for almost year, try to feel assured. i dont have an als diagnosed but I do have weakness, noted from a PT, I also notice. I also have muscle loss. I still hold out that I am ok, but obviously I am still nervous.l hang in there and if twitching is the main concern, and that is all you have, then go with that!

enjoy baby, I have 3 and it is the best part of me and my most joyfull momenys are with them
 

BoxersRule

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Thank you all

For your post..not just because they are POSITIVE post and your making me feel so much better for thank you for even taking the time to post. I think for the most part I need to stay away from this forum and bfs forums again because it seems when I come back even to help people that I get really really scared again. Thats just not what I need right now. I've lost enough.

I love yall and pray daily for your strength.

Happy Hallows Eve.
(though I really love the birth of christ and christmas better)

DeeDee
 

crystalkk

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DeeDee,

Congrats on the baby.....Please stop worrying and enjoy your life.
 
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