Hi everyone
So glad to have found this board.I was dx with als last feb.So much has happened since then. Looking back I had symtoms for quite sometime but always shrugged them off,weakness in my right forearm, leg spasms which I thought were caused by standing too long,when I started having stomach spasms, I thought I had some kind of hernia, but the doc didn't find anything so I ignored it. It wasn't until (all of a sudden my foot started to drag and my flip flops wouldn't stay on) that I realized something was really wrong. Then it was 3 different neurologist,countless mri, mrs & quite a few emgs.
My weakness is progressing almost weekly.I can still do some things (especially with the help of family & friends) I'm grateful for every little thing I can still do(and I do mean little. I feel so blessed to have wonderful people around me.But that's really the scariest part of this whole thing. I am so afraid for all of them. My husband, children & friends.Sometimes my sadness for them is overwhelming.
I still have lots of questions. Thanks for listening.

Hi there.

I am so sorry to hear about your situation. I will keep you, and your family and friends in my prayers. Sounds like you have a great support system, and great love in your life. That is good. You need that support right now.

What are the doctors doing for you at this point? Have they offered you an therapy or support to handle your symptoms? (and, I mean in addition to psychological support--physical and medicinal support). Do they have any sort of support group in your area? I would be more than willing to do some research for you if you wish.

Hugs,

Lu Ann

Thanks you for your good wishes & prayers.That's what I need right now. I belong to mda sponsered program at Mt.Sinai hospital in Manhattan. It's a really good one. I get to see the doc,nurse,pt, ot & social worker all in the same day about every 3 months or as needed.
They have begun a support group, but I've only been there once so far. It was very iformative & everyone there was great. Hope to go to the next meeting. They meet once a month.
Right now I am taking bacoflen for the spasms and celebrex for inflamation & pain. So far, not much difference in symtoms. Thank you for offering to do research. Any info you could provide would definitely help. Are you also a als patient or do you know someone with als?
Thanks again

Hi there.

I will do some looking out there for you. (research)

Glad you found a support group. Actually, considering the circumstances, you sound quite well emotionally. I am sure you have your ups and downs, but your attitude sounds great. I wish I could say the same for myself.

I am not an als patient, that I know of so far anyway. I am 34 years old, and a mother of two toddlers. How old are you? (if you don't mind me asking) I have horrible symptoms for the past three months. It started out as numb arms and legs. They did an MRI, which ruled out MS. But, the symptoms change each week. Now, I have tight muscles all over my body, tingling, and joint pain. And, that horrible twitching all over my body from time to time. All of these symptoms come and go, and they have no idea what it is so far. I don't have weakness, but the pain is so bad I can't lift my children sometimes. I don't sleep at night, and have cried tons thinking I have this disease.

We had a family friend that had als, and I still remember him quite fondly. He was so full of life, and it pained me to see how things changed for himself, and his family.

So, I decided that while I go through all of my many doctors appointments to discover what I have, I will try to be an advocate to those who need me. Whether it be just for support, research, a shoulder to cry on, strength...whatever. Keeps me positive, less depressed, and able to cope with the unknown. Does that make sense?

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Have your doctors prescribed you Rilutek yet? That is the only approved ALS drug out there at this time. It is supposed to slow the progression.

You have a great adittude. Those support groups are very helpful. They can be sad at times, but ALS isn't the happiest disease to have. This site is a great way to get information and support also. I come here every day. I don't have ALS. My father just recently passed away from it. I will think of you and your family. Take care and keep us all posted of your progress.

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Hi
Not too sure so well I am emotionally. Some good days, some bad. Just try to make the best of everything. Sometimes it works sometimes it doesnot.I turned the big 50 this past June. I have three children, ages 30,28 & the youngest will turn 20 this month. She is the only one living at home with myself & my husband.
It must be REALLY hard for you with young toddlers. Alot more to think about. But the docs aren't sure yet,it could be a million other things. Take each day as it comes.

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Hi Slaughter,
My doctor did say I could start Rilutek. He left it up to me, said he didn't think it was all too helpful,considering the cost. Do you have any information about it? Sorry to hear about your father. I've been reading some of your posts and it sounds as if you had a great relationship. You made the best possible use of time. That's what I hope to achieve with my children and husband.
It sounds as if you are very informed about als.Any help you could give would be greatly appreciated!Thanks
Bye for now

Rilutek is an FDA approved drug for ALS. The generic form is Riluzole. It is very expensive! I think it runs about $900.00 a bottle that will last only one month. Luckly my dad had great insurance to cover the cost. He had a $10.00 copay and that was it! It is supposed to slow the progression of ALS by forming a protective coat around each motor neuron. So they will not die as quickly. Doctors are not completly sure if it prolongs life by much, but it is hope. What sort of informatin on ALS are you looking for? When my father was ill I did so much research I could start my own ALS library. I have all the documents that my dad kept. He had his own ALS binder, with info from social security, to different studies. It is weird to go through it, I see is handwriting all over every page. I guess maybe that is why I keep it. There are many websites to go to for information. Just let me know what sort of info you are needing. here is a site on rilutek. the webstie is a great one also. Doug was his name. He created this site while he was ill for other ALS patients. He passed away this year I think. I recommend looking around when you can. Very informative. All my prayers...
http://www.lougehrigsdisease.net/drugs/rilutek.htm

Slaughter
Thank you! I've just spent a few hrs. checking out your Dad's site.It is wonderful! So much info, I'm sure it will help myself & others to answer many ???
thanks again! Talk to you soon

oh woops! I think you misunderstood me a little. That is not my dad's website. My dad could bearly understand how to turn on a computer. He had no clue of how they worked. I usually did all the computer work for him.

That website was created by a man named Doug Eshleman. My father's name was Kay Dwight Empey.
Doug documented his entire disease from begining to end. He had a lot to say to the world. I am glad he did. I used his site for a lot of reasons. His positive out look was incredible! It reminds me of "Tuesdays with Morrie." I just got finished reading that book. WOW! very powerful. (I recommend reading it if you havn't already.) Anyway just wanted to clear up that mixup. My dad was not talented with the computer at all. But he was with many, many other things. I am happy to know you liked that site. I like it as well.

Slaughter,
Sorry about that...probably my mistake, thanks for sending the site anyway. I'm sure it will help.
I haven't read Tuesdays with Morrie yet, have it here since it first came out. That was way before I even had any medical problems. I remember my daughter read it at that time & loved it. I'm sort of scared to read it right now!
Thank again
talk to you soon http://www.healthboards.com/ubb/rolleyes.gif