New Arrival

[Bill Simpson]

Hi all, reciently diagnosed with ALS. Spent the summer undergoing tests after test and finally was able to get in to see a Neuro who ran more tests and determined ALS. I had suspected the same via Internet searching. BUT All I got was a prescription for Rilutex (Riluzone) and, "see you in 6 weeks" .

I'm like a deer in the headlights, here... Need a Prognosis, what to expect, how long, how bad, How anything...

 

[Danijela]

Hi Bill,

welcome to the forum, but sorry about your diagnosis. ALS affects everyone differently, yet I understand your need to seek patterns...answers. There must be support available to you via local ALS organisations, I am sure our American PALS will chime in with suggestions.

All the best, Dani

 

[sadiemae]

We were stunned at first that we wouldn't being seeing a doc weekly too! Our neuro said see you in 6 months last time we saw her, and we said how about 3 months, and she said OK.

 

[CAHPAH]

Bill
Welcome to the forum, so sorry you have to be here. My advise is to get in touch with your local ALS Association. They will give you a packet with all kinds of information. If you Neuro is not part of an ALS clinic, I would suggest looking into one. Your ALSA should be able to help you locate one. As far as a prognosis goes, we've been dealing with my wife's diagnosed for 3 years now and there is still no way to tell. ALS effects everyone differantly and it can plateu in certain individuals and undetermined amount of time. It's hard, I know. Best of wishes to you.

 

[Sequoia]

Welcome Bill, I was diagnosed last august, and i know that feeling of being a deer frozen in headlights. Good description of one just hearing:"You have ALS". Try to take regular deep breaths, and sigh loudly to let go of the tension that builds in the "not knowing space". You'll find your way thru all this step by step, but like others have said here, find the ALSA near you and ask if there is a ALS Clinic nearby. These clinics have a Team of doctors who help you with everything! I have Neuro, nurse, dietician, PT, OP, speech pathologist, respiratory therapist, als researcher, a social worker, and an ALSA support Team leader. I meet with them every 3 months, unless something comes up then I can call any of these folks and get the answers I need. I definatley do not feel alone anymore! BUt this forum is where I go the most for support and information directly from those living thru this disease. Nothing like experiential knowledge! Hope you read the threads and keep posting your questons. This is a great bunch of friends here!Try to keep your hopes high, you are not a diagnosis! Live the fullest every minute you have.

 

[Katie C]

Going to sound like a broken record here but... Welcome - The ALS Association is a good place to start... from there you can locate your closest ALSA chapter. Request/demand a second opinion, preferably at an als clinic (again... the ALSA website has a good list of clinics.) Your insurance will cover a second opinion... heck, we have Kaiser and they actually paid for the second opinion appointment at UCSF for us! Also... try to find yourself a neuro with experience in ALS. The neuro that first gave Glen his diagnosis actually told him he didn't need to come back! After some research we found that Kaiser had an ALS specialist in system, and not too far away. Made a HUGE difference in Glen's level of care and my level of confidence caring for him.

In the meantime... this is a good time to look and see if your legal paperwork needs a tune up: will, trust, power of attorney, health care directive, etc. Even if it turns out your diagnosis is different, there's peace of mind knowing these are all taken care of.

Good luck to you.

 

[Sequoia]

Just got an idea from Joel, to point new folks on the forum to where you can find answers to how to post, how to make friends, ect....
He suggested that you look above this page to the blue bar and click on FAQ, then you will see these links:

General Forum Usage
User Profile Features
Reading and Posting Messages

Ive been here a while and this is the first time I ever went there! I want new folks to know that if someone requests you become there friend, there is a procedure you have to follow. It took me a while to figure it out!
God bless and have fun exploring the ins and outs of the Forum

 

[abbas child]

Bill, welcome. Where did your symptoms begin? Was is in your face, legs, arms... All three are common. Less so is when it starts in the diaphragm. You've been given a lot of information by those folks whose posts are above. I really do empathize with your reaction. I was diagnosed at Johns Hopkins, which isn't terribly close by. At the end of his explanation I asked my Neuro when I should return, and he said I didn't need to; I could be cared for locally... but if I did want to, I could return. (?) And, I'm sure, like you I was thinking, OK... this is a serious disease. And I don't need to return? (disclaimer, that doctor has left Hopkins, although he was fine all in all) It was pretty darn surreal. This forum is very helpful, Bill. Please do continue to ask, to read, and someone will be ready always to try and to help.

Ann

 

[Zaphoon]

Bill,

I'm sorry to hear about your diagnosed. It stinks but life goes on and pretty soon you'll find you've pulled your eyes out of the shiny headlights and see that life goes on all around and making continual adaptations becomes your focus. Make one adaptation and start looking at the next.

Here's hoping your progression comes to a snail's pace!

 

[notgivnup]

So sorry about your diagnosed,I was diagnosed just 3 weeks ago myself and confirmed just last week. This is a very difficult time. I know your head is swamped with so much right now.

I have found that these beautiful people here have so much love, encouragement and wisdom to share with us. I have contacted the ALS headquarters and they have given me much information and referred me to the organization that can help me here. Please contact them they are very helpful.

My prayers go out to you and your family. May God give you the strenght you need and shower you in His Love

 

[hope2000]

My heart goes out 2 u Bill,Everything ur feeling is validated.....I have had als 4 10yrs I was told with the way things were I had 2-3 but I'm still here, just hope that helps . I have pain associated w/my als ,footdrop.etc. God bless U Bill and remember were here 2 HELP ANSWER ANY QUESTIONS FEEL FREE 2 ASK.......

 

[BarryG]

Welcome to the forum Bill. I don't have much to add to what everyone else has said but any questions that you have, just ask and we will try to answer.

 

[Phil M]

Hey Bill! sorry your here, but welcome! Do yourself a favor, and don't worry about a prognosis. They can't give you a accurate one anyway. Do whatever you can to smile, laugh, and have a good time!