It's ALS

[JenniLee]

Went to Columbia and was diagnosed w/ ALS. They did blood, EMG, Nerve Conduction and some deep cellular MRI. Dr. Gordon said minimal nerve damage & minimal progression. But my speech is almost gone, my hands are weak, my walking is unstable, foot drop, twitching, fatigue.

How do I cope when I am fading away. How do u fight it when u have 2 look @ your 5 & 6 year old girls; know there was so much u wanted 2 do w/ them. Everything I do is a struggle; brushing my teeth, getting dressed ( I can't put a bra on or zip a sweatshirt).

PLEASE, someone tell me what to do? How do I go on? I don't want to wake up in the morning; it's too hard. I don't want my kids seeing me like this.

Is there any POSSIBLE way the diagnosed is wrong?

Jen

 

[JenniLee]

Ruled out MG

They said the tests they ran were ruling other things out. I did not have a spinal tap or muscle biopsy. Had, 24 hr urine, losts of blood, EMG, NC, & MRA.

I guess I was "easy". I don't get how I was diagnosed so quickly & others take months & years?

 

[MtPockets]

So sorry for the DX Jen.

I know there is not much we can say after hearing the DX. It is such a blow to us all when it happens. It has been 15 months now since I got my DX. All I know to tell you is live one day at a time. Concentrate on the LIVING part, not on the other.

I'm not going to lie to you and tell you it is going to be fine, but in the midst of the storm we face we can find peace in and with God, if we seek His help. We are at a point where man cannot help us, Doctors cannot help us, the only hope we have is God. I pray that somehow you can find peace, one day at a time.

God Bless
Capt AL

 

[liz]

Jen -

Sorry to hear about your diagnosis. Dealing with the thought of leaving your young kids behind is very difficult. I found those feelings to be most intense right around the time I was diagnosed. I'm not saying it's easy now, but I really try to focus on the present with my kids. Them "seeing me like this" isn't so bad. Kids can be extraordinarily understanding and sensitive. If you're finding yourself overwhelmingly anxious or depressed right now, you could consider taking some medication for that. It might be necessary to help you pick yourself up, move ahead, and start making decisions about your future. Hang in there.

Liz

 

[vmd]

jen:

I cannot add to the words of wisdom you have received from the folks so far. What I can do is to keep you and your family in my prayers. I admire Mike's (quadbliss) attitude after his diagnosis. He states that this is the best time in his life. That is the attitude I want to adopt when I am diagnosed. Meanwhile, you do the best you can for yourself with the help and support of others.

There is always the possibility of a misdiagnosis, so one can hold out some hope. The muscle biposy, is a more definitive test and perhaps the doctors will conduct one on you.

 

[mamaoftwo]

Jen
I dont want to give you false hope but I have read that some 15% of ALS cases are misdiagnosis. That doesn't of course mean that your case is but it does mean that there is always that possibility and if you still feel that they werent thorough enough, maybe request a muscle biopsy etc. Maybe some of the PALS on here can give you their thoughts on this. I feel a bit unqualified to comment.
I dont know how Col rates in terms of ALS expertise but others here would know. Perhaps you should consider the Mayo Clinic or going to one of the big ALS centers that I read about on here all the time. If they confirm your diagnosis then you have lost nothing. Just a thought.

 

[CindyM]

Hi Jen-sorry to hear of the DX. Most people say it hits like a ton of bricks. Give yoursefl time to adjust to this heavy news. And try to do a little something special for yourself every day. Just a little thing like your favorite food, anything that tells yourself, "you are special and deserve kindness in these dark days." Write more when you feel up to it and let us know how it is going. Hugs, Cindy

 

[puzzled36]

Jen, I'm so,so sorry to hear that you got diagnosed. I will pray for you and your family. May your progression be slow and your happy memories with your children be many.
Take care,
Gina

 

[brooksea]

Jennie,

Please Know how sorry I am that you have been diagnosed with ALS. I pray that you will have all the support you could ask for from your family and friends.

I hope that your parents will help you with your children. If they are not able, you would be surprised at those willing.

I cannot imagine being the ONE...as my husband is the ONE. We have a 7 year old. But I will tell you this- I believe having children will help you survive!

You will have to take one day at a time. I know, an old saying! But it is helpful in this instance.

Even if you think your life is over, it is not! My husband has joined the Cub Scouts with our son and is a Den Co-Leader. He won't be able to teach how to tie knots and other things that use fine motor skills, but at least he will be there for the time he is able. He is losing speech ability, but he's explained this to everyone and I think this will be alearning experience for all involved.

Please do not give up hope, but know that you will go through this period of grieving for things lost, that maybe you had thought your future might bring. It may take a while for you to accept and the others have given good advice. You may want to ask your neuro for antidepressants and something to help you sleep.

I feel for you...and I pray you will find peace.

 

[ltr]

Jen - Annmarie and I have wondered how you have been and speak of you often. I am really glad to hear from you, but very sad about your illness. I know how much your children mean to you and I know how hard it is to think about how they will handle this. Please try to do as Capt. Al says, live each day and try not to concentrate on not living well. I hope your unhappiness fades soon and I will pray for you. ~Leslie