Annemarie - about Monday

[mamaoftwo]

Please try not to read too much into the date that they have asked you to come in. Look what happened with Jamie. He was totally convinced that he could hear something different in the nurse's voice on the phone and that he was about to get the bad news. But lo and behold, he was wrong and his muscle biopsy was good news not bad. You never know.
In our situation, it is easy to read all sorts of things into stuff that you'd not even notice otherwise. I think VMD said that one time someone in his class mentioned that a family member had died and in his mind, he was like "if this person says it was ALS, it's a sign". (I think it was VMD). I have done the same. I met someone recently who told me that her dad is in a wheelchair and how awful things are for him. I didnt ask why - was too scared - and then she volunteered it. "He has ALS or Lou Gerhigs disease. You might not have heard of it". Ugh, I thought it was a sign too.
Who knows. Life is mysterious sometimes but I really wouldnt worry too much about the date.
I will be thinking of you and hoping for a good outcome. I have my next appointment with my nuero, the week that my little one starts kindergarten. That truly sucks. I will be an emotional wreck as it is. So I know what you are going through.

 

[Jamiet]

What am i missing here, annmarie, something importaint coming up? Please let me know.......!

 

[mamaoftwo]

Jamie - hope I didnt get this wrong but I read this post earlier and assumed she meant this Monday was going to be a big day with the neuro. I think she posted it today. i may have misunderstood....

"Edna May,
your message for a shoulder to lean on was so endearing. You are always so kind to everyone, I am worried about Leslie, she is such a great lady. And VMD is alone, this is extra sad. Thank you for caring about the younger folks on the board, I know als is hard at any age, but as you know young children really is the saddest thing of all. How do we prepare to say good bye to our children? I cannot even fathom it without getting physically ill. I am so scared that the doc will diagnosed. me on Monday, and I will fall faint, I am really scared of that. I know that my appt. is scheduled on als clinic day, with the specialist in house, and that is the day they want me there, oh boy does not sound good."

 

[vmd]

anmarie:

I will keep you in my prayers and hope that you have a clean EMG on Monday.

mamoftwo:

Yes, that was me. I thought that this was a message from God. Of course, if it was, He also has the capacity to produce miracles as well.

 

[ltr]

Annmarie - I don't know what I would do without ya! If I could be there with you Monday, I surely would. But, you know if you need me, I will drop what I am doing and start driving.

I think your neuro wants to get you scheduled for a biopsy and he needs the emg to fulfill his criteria. Hang in there. I think it will turn out good, something treatable. ~Leslie

 

[Jamiet]

It's gonna be oK....ok...

Have faith....something they can just fix....give you steroids.

I would def. request a biopsy.

please let me know

mama..no problem, i'm just concerned about Annmarie...no harm meant, i'm pretty easy going...

thx,

jamie

 

[vmd]

annmarie:

I would think if your symptoms have not decidedly progressed since your last emg, then your emg should be ok. Let's pray that this is the case.

 

[vmd]

I know your fears, but there is little reason why the emg would show abnormality when your symptoms have been fairly stable. Pray for me, as my weakness, unfortunately, seems to be progressing and migrating.

 

[Icanmanz]

Thanks VMD, I just feel like it is going to be so abnormal, just feel like a diagnosed. is on the way, but thanks for the prayers, keep them coming hot and heavy...

annmarie, I will be praying for you. I pray to God that you get good news. God works in very mysterious ways. Just say a prayer or two, sleep well, and the rest will be in God's hands. Good Luck!


In my prayers,
Irma

annmarie, this one was one of my late son's favorite, and I am passing it on you. I hope you don't mind.

James1:2-4 2 My brothers and sisters, be very happy when you are tested in different ways. 3-You know that such testing of your faith produces endurance.4 Endure until your testing is over. Then you will be mature and complete, and you won't need anything.

 

[Icanmanz]

I am praying everyday for you, My atrophy is worse, and my cramping and stiffness have increased, and I have severe clonus. Not good signs.. VMD, I think of you and hope that you will stop progressing, and get better. My tongue twitches all the time, and hurts so bad.. I just do not think I have benign twitching, it seems ominious. This disease just stinks, none of us should ever have to think about it.

Just read your post annmarie, after i sent off my post to you. Bless your heart. I have never been in an Pals' shoes, it is just so sad to read about what you guys are going through. Annemarie, am I the only Cal here or what? I feel so out of place! Bless you!

Irma

 

[vmd]

annmarie:

If I remember correctly, your atrophy is mostly in your hands, correct? Bu I also recall that we concluded that identifying atrophy in the hand is difficult, especially for someone with smaller hands, such as yours. How is your strength?

Irma:

Yes, I think that if God gives us challenges it is because such challenges are necessary for our salvation. Of course, I lose sleep over having to leave my daughter without a father.

 

[Icanmanz]

annmarie:

If I remember correctly, your atrophy is mostly in your hands, correct? Bu I also recall that we concluded that identifying atrophy in the hand is difficult, especially for someone with smaller hands, such as yours. How is your strength?

Irma:

Yes, I think that if God gives us challenges it is because such challenges are necessary for our salvation. Of course, I lose sleep over having to leave my daughter without a father.

Bless you, vmd. How old is your daughter? Of course als is a horrible disease. It touches a lot of people around that Pal. I have walked in those shoes, I know the feeling, dear. May God bless you, and guide you the best way he can for your sake and your family's. Keep us posted. Please let me know if I am getting out of hand.

Irma

 

[vmd]

My daughter is 11. Thank you for inquiring.

 

[Icanmanz]

Irma,
you are not out of place at all, you are a much needed part of the form, many cals are around the board, and have been ass supportive as they can be. CJ, Luna Runa, Shell Shell, Tom, to name a few. Cals have a special place in my heart, they are as important as the patient, they are the motion in the patients ocean.. Ha Ha

Thank you, annmarie! Have a blessed one, and may God shower you with "good news."
Let us know. Remember, we are all pulling for you!

Irma

 

[puzzled36]

Annmarie - I'm sending positive thoughts your way. I agree with you, the amount of time you've been dealing with this, you may show changes and get a diagnosis but I have a good feeling it will be treatable or at worst life-changing but not fatal. Hang in there, we're all pulling for you.

Gina