Feel Free to kick me off- Im ready to kick myself outta the world..

[BoxersRule]

Hey all- I know basically I have been told to scram get lost etc. I dont know what is going on with me. For one my horomones from this pregnancy are crazy. I am off my a.d.d medications and anxiety pills as well.
I know what I am doing is not fair to my unborn child with all this worry but what can I DO! I cant help I wake up day after day that I am not going to be able to see my little girl take her first steps etc. I type this right now with tears just streaming down my face. Tomorrow I go to the Doctor and I hope they set a induction date. I am 38.5 weeks. He promised me before 39 weeks we could induce. If all is well. I really need my medication....

I know I had a clean emg. @ 5 months into widespread random twitches (no weakness no atrophy) 10 muscles tested from foot all the way up to deltoid. Yes, ok it ruled out limb onset. Now I struggle with "I didnt have my facial muscles tested" etc.
Past week I feel like I am going to stumble over my words or my speech is thick. It isn't like it always. I can concentrate and say everything normal. If I get up in the mornings and test myself its like I can hear myself slur. No one else notices it and they laugh at me when I ask them if I am slurring. July will be 6 months into this malady that has taken my life (literally with worry).

I can do everything with my tongue- side to side fast, up and down fast- make a taco shape out of it...no choking on foods and i can down a drink very fast. I just hate it when I feel like Im gonna stumble or my s's come out with a lisp. I am @ lost on what to do. I mentioned it to my neuro and she wouldnt even think about it. I practically had to make a mockery of myself to get a EMG *in the first place*. She kept saying with your age (28), your gender, your symptoms, no weakness , no atrophy, normal reflexes ...YOU DONT HAVE IT. Finally 2nd visit she did emg of whole right side of body. There wasnt one i-ota found.
Sooo is it possible I have bulbar- als? I know regardless because I have widespread twitching my emg should have been abnormal no matter the stick. Because I have random pops all over. I know anxiety can cause you to stumble over words..WHAT IS SLURRING? is it drunk sounding, is it a lisp?

Im sorry yall. I try to go away and do my own thing- but its very hard. I dont want to keep posting but I just need help. My psychiatrist is about done with me, the neuro, lord if i walk back in there- she may commit me. I know yall are tired of me. Im just soooo hurt. I cant help it.
I dont think I Am being rational myself- I've had this 6 months almost- clean EMG and now I am saying bulbar? those are two different animals arent they? limb onset and bbar?

I dont even expect to hardly get a response. How many times can you tell someone their ok til they believe it.

 

[CindyM]

I dont even expect to hardly get a response. How many times can you tell someone their ok til they believe it.

You will believe it soon enough, Boxer. Your baby is due at any time, right? Then you can go back on your meds and plus, your hormones will settle. Meanwhile, try acting as if you believe you are going to be OK. It is a little like whistling in the dark, but effective. Just "act as if..." until your mind begins to follow.

So go put away some baby things, take one last visit to the mall unencumbered by diaper bags and strollers, and treat yourself to something yummy. Then, when the baby is born, come back and tell us all about the miracle of birth! :-D
Cindy

 

[Al]

Ok Boxer I'm not making fun of you but with an Alabama drawl how do you tell if you're slurring anyway. I've been through there a couple times and can't tell what they're saying half the time anyway.
AL.

 

[Al]

By the way I won't kick you off because in 4 weeks after the baby is born and you're back to normal I and others want to hear about it.
AL.

 

[BoxersRule]

Thanks Al

lol your right we do SLURRRRR in Alabama a little. My husband jokes me all the time and says "you've ALWAYS had a LISP with certain words"...I am missing a bottom molar because of a infection- he said its been that way ever since. WHY CANT MY STUPID HEAD think logically !

Anyhow- I think I have just got mixed reviews on these clean EMG's and then later diagnosed with bulbar als- BECAUSE it hadnt manifested itself into the limbs yet. However- as my neuro said "Your twitching all over- found a fasic in my calve with no issues and said if it was ALS anywhere- we 'd know it w/ this emg because you are twitching in your limbs". No need for tongue etc.

So I am throwing in bits in peices of tidbit info and running to the slums with it. I cant be logic and say clean emg, im missing a bottom molar (for now, go figure Im in Alabama) and I am a red neck so I slurrrrrrr a little lol....

Thanks for making me smile AL! Seriously. I do hope all this goes away when baby gets here- Its my dream and prayers!

 

[patricia1]

Hi Boxer Gee I am sorry to see you arent feeling better.i hadnt seen you post a couple of days and figured you finally realized you arent sick.

I know between the hormones and lack of medication you would get all anxiety back. I cant tell you how many pregnant woman on this forum thought they had ALS while pregnant. Maybe it is all hormonal. They all had the same worries as you. And then we dont hear from them after they get busy wih the baby.

your mind can convince you of almost anything.

I wish you peace and happiness

Pat

 

[Peg B]

Hi Boxer,

Now you are scarring me. I quote, "I do hope all this goes away when baby gets here- Its my dream and prayers!"

Guess what! It won't. You have another person to take of 24/7. Make sure you have help with that baby. You need to get back on meds. DO NOT think that it is the baby's job to make you better - it is not. The baby will not be magic to fix you. Are you planning on breast feeding? I am only asking in that you may not be able to get back on your meds if that is what you are going to do. Those meds most likely would go directly to the baby. The baby does not need them. If you have to forgo your meds or forgo breast feeding, neither is the baby's fault. It is hard to be a parent, even when everything is perfect. Do I need to be afraid for your baby or are you up for this? You need to keep people around not push them away. I wish you great joy and happiness and wonderful parenting skills to help your child flourish.

Try writing everyday about all the goods things in your life. You are going to have to work at being happy. Cindy is right - follow her advice. You must take good care of that baby. Ask your therapist about postpartum depression. Are you at risk?

I don't ask any of this to scare you but to help you turn your attention to the beautiful gift you are about to receive. I hope you think I am nuts to even worry about your baby. Are you worried for him or her - not because you may have ALS, but because you may be too unavailable to meet your child's needs?

I wish you and all of your family peace and love and stability. Sincerely, Peg

 

[Peg B]

Hi Dee Dee,

Iam back again as I just realized this is a different but really the same thread as you wrote under the "Is this ALS" heading.

Did you ever read Romeo and Juliet? There is a section when Romeo is crying to Fryer Tuck, because he has been banished from Verona and will not be able to be in the same town as Juliet. He accidently killed her cousin, Tibalt in a sword fight. Tragidies are like that. Anyway Friar Tuck says a list something like this.

What you are crying, seeming like a woman though you are in a man's body?! (a bit sexist I think)

Be art thou happy you are alive and Tibult is dead - you won the fight not him.
Be art thou happy you are banised not executed.
Be art thou happy you have Juliet's love.
Be art thou happy I have a plan

There is some more but I am too tired to look it up. I have been diagnosed, but even now a year and a half after the DX they are not sure if it's ALS or MMN. I have had symptoms since 2002. I had to drop out of my full time job, my PhD program, and a part time university instructor position. But...

I am art thou happy I am alive - others Dx at the same time are dead.
I am art thou happy I can type yet not write- others cannot use their hands.
I am art happy I can walk a whole mile sometimes - others not a block.

So even Shakespere says - Count your blessings. Our brains and attitude are key here not our anxiety and frustration. I do go on tooith much. Please forgive but please calm thyself.

Sometimes it is so hard to quiet the mind. My new mantra since retirement is SHSS (you know like put your finger to your mouth and tell little kids to guiet down) it stands for: silence, humility, simplicity and service. That is my job now. Find a mantra to calm you and say it over and over so you can calm yourself and be art thou happy. Yours in frienship through Christ, Peg

 

[vmd]

Peg;

Out of curiosity, what specific symptoms prevented you from teaching at the University? I also teach but, with God's help, continue to teach even under these trying circumstances

 

[pattyp]

Hi vmd in Spokane, I live in Kalispell MT and wondered if you'd care to correspond? Pattyp

 

[Peg B]

VMD,

I will send you a private message. Peg

 

[vmd]

Patty:

Yes, please send me a PM. Actually, I live in North Idaho (although my profile states Spokane).

 

[pattyp]

VMD,
I'm assuming PM is private message but I don't know how to do that
Patty

 

[pattyp]

VMD,

Hi, I've just been informed that I can't post a PM until I have reached postings

I guess I'll get back to you later!

I'll be in Spokane next week for 2 dr appts and was interested in any suggestions you might have.

Patty

 

[Al]

I sent Patty a PM. Being a mooderator I can do that. I told her the number of posts needed to access PM. If we tell someone this we do it as a courtesy because we feel you are not a spammer or selling something. We ask that you do not reveal the number as the spammers can read it, post a bunch and then start dumping. Then we have to raise the number again and get rid of the crap. Most spammers won't spend the time trying to find out the number, they look for easy pickings. Hence the secrecy.
AL.