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CBowman

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Jan 23, 2007
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Learn about ALS
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Florida
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Tampa
Well, I just got back from my Neuro doctors office and my knee reflexes were hyper, have more weakness than the last visit, and have muscle twitching in legs and arms. Tried 3 rounds of IVIG with little success. He told me I have ALS.

I have an appointment to Mayo clinic on 3/26/07. Is this a waste of time?

For those of you who do have ALS, please tell me its not that bad (lie to me). I am only 34 years old. Would you take the drug Ritelex (spelling), and is it covered by insurance?

Any other advice would be great:(

Thanks
Chad
 

Rhonda

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Joined
Sep 12, 2006
Messages
108
Reason
PALS
Country
US
State
GA
City
Mableton
Hi Chad,
This is just my personel opinion, Yes I would take the Rilutek if it doesn't bother your stomach, I take 2 a day on a empty stomach, so far so good no side effects. My insurance does pay for it I get a 3 month supply for $45.00. I would go to clinic, I go every 3-4 months and sooner if I have any problems. I live in GA and I go to Emory and
it helps to go. I am there around 4 to 6 hrs. and I see different Doctors or therapist that
are specialist in each field that we may cross at sometime. I also see my neurologist that day. It just helps to stay ahead of this awful disease if you can. Also if you can attend the support group meetings, tons of info. from people with the same problems as us. It really has helped my husband who is my caregiver. I am 45 with four children,
thank God my youngest is 17 and I don't have small children, my heart goes out to those that do. It's hard on everyone no matter what the age. I have a grand daughter that is 3 and she is what keeps me going, I have difficulty with speech but it doesn't bother her, she will bring a book to me and say read it nana. I just do it and she acts like she understands it all. I was diagnosed in June 2006 and until a few wks. ago I was a wreck, cried everyday and I still cry on occasion. But I do believe in Christ and when it's time for me to go it will be in his timing not mine and I will be whole again & I will see my faimly again and that is where I find peace in this storm. Take care of yourself, don't keep your emotions in let them out it really helps to just let them go.
Sorry so long. Love & Prayers, Rhonda
 

quadbliss

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Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi Chad,

Sorry to here about your bad news. I believe that we are all born with a purpose. When a person is diagnosed with a debilitating disease like ALS, there are still many ways they can contribute to society. It will be more difficult than the average experience, but that only makes you a stronger person. You will have to grieve for a while, and things may get rather dark. But when you come out on the other side, you will be given the opportunity for profound personal growth. An opportunity that most people never get. With the right attitude, this can actually be a positive experience.

I always hesitate to express such glowing ideas because they are so contrary to most people's experience, but this is the path I am traveling. I can honestly say, I am happier than I have ever been. You have a choice.

Mike
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Chad sorry about the news. I won't lie to you. It's not fun but it is bearable with the right attitude as Mike says. I'd go to the Mayo as there will be specialists there that you probably wouldn't see in Tampa and they might be able to see something the other guy has missed. I am assuming this would be a second opinion and hopefully you have Ins. as the clinic would be an expensive visit I would think. As for the Rilutek it is best taken as early as possible as it seems to do the most good on early cases rather on people with further progression.
AL
 

saska

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Jan 19, 2007
Messages
93
Reason
Lost a loved one
Country
US
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Colorado
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Lakewood
Hi Chad,

I, too, am so sorry to hear your bad news...my heart goes out to you. I believe that what quadbliss has stated is true about us all being born with a purpose. And, I know personally that one can experience tremendous personal growth through adversity, though I have never been challenged with anything as immense as ALS. I remember my friend, Mike, though, telling me about how, out of necessity, he became far stronger mentally even as his body continued to weaken. He marveled at that. Best of luck to you. Sharon
 

Jamiet

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616
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Learn about ALS
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US
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Louisiana
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Carencro
Chad,

Reading your post, but already knew from our conv. today. I'm in tears for the second time today, this time for you.

Your like a best friend, young like me with so much life ahead...and now a pretty significant detour.

I'll be here when you need me, all you have to do is get online..I'll be an ear to listen to your bad days, and here to enjoy the good ones.

Take the Riloutek, it can't hurt. Get on the vitamins and start fighting.

My friend will be sending you an email with some contact information, for support groups and the other good people around Tampa to help.

Talk to you later buddy!

Jamie
 

AlmasDaddy

Active member
Joined
Dec 29, 2006
Messages
31
Reason
PALS
Country
US
State
CA
City
Ca
Bad day

Chad,
sorry to hear about the news. I also have ALS, and became a member of the club two years ago. I have learned quite a bit about the diseases progression during that time. One of the good things that I've noticed from your post is that it appears you have limb onset ALS. Which will usually progressed slower than the bulbar onset. You should definitely go to the Mayo Clinic. They will be able to tell you what the best course of action is at this point. They will have a short list of vitamins, like co-enzyme Q10 vitamin E and maybe a few others. They will tell you about Rilutek. And yes, it is usually covered by insurance. They may also have a few clinical trials going on that they will tell you about. Not to mention they will be an invaluable resource as the disease progresses. Rilutek, I took it, and it made me sleepy all the time. So I figured if I was going to sleep for two or three hours during the day what was the point. So I stopped taking it, not to mention you have to stay up on blood tests to make sure it doesn't ruin your liver. You have a lot more people in your corner than you think. I wish you nothing but the best. If you need somebody to talk to don't hesitate to e-mail me. Many blessings to you and your family, Michael
 
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zac111

Distinguished member
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Jan 14, 2007
Messages
175
Reason
PALS
Country
US
State
al
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mobile
hi chad im sorry about your news i have brisk reflex of the knees and am still waiting for diagnosed i will keep you in my prayers.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I would just like to say that while patients like me may be a good website (I did join) after joining I was piled on by spam like you wouldn't believe and complained on the website and was told that they didn't sell our information. As AlmasDaddy says they have all the information about supplements and drugs. They have advertising as well. Are they getting anything in return for this? I don't know. Just be wary.
AL.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hi Chad -

Real sorry to hear about your diagnosis. For me, I experienced very intense stress and anxiety during the diagnostic period and immediately after but then things settled down. I have some moody spells over this but mostly I just go about my days. Have been lucky not to have rapid progression. My kids are school age so I'm hoping to hang in there for awhile but know I'll get whatever I get. I'm taking Rilutek ($40/month) - have no side effects and liver test results OK so will continue. Also taking an antioxidant supplement. As for going to the Mayo Clinic - I do think a second opinion is reasonable since this is a difficult to diagnose disease.

We're with you. Don't despair.

Liz
 

JACKIEMAX

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Joined
Jan 22, 2007
Messages
159
Country
US
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TN
City
Baxter
chad

chad - i know you said lie to you, and i hate that you are only 34, but als is not something that can be lied about. it's as real as it gets. my husband is 70 years old, and when he was diagnosed a few months ago, he could outwork four 30 year olds.

he had played racqet ball for over 30 years, was retired military, and in perfect physical condition. he would stay outside 6-8 hours a day during nice weather, working on our veg. garden, landscaping our 2 acres of yard, and working on dozens of bonsaii trees that he loves to create.

this was last spring he did all this. this winter he can do nothing but sit on the couch, watch tv, and read. it takes all the strength he has to take a shower.

just stay in this forum, chad, and not only will the members here encourage and pray for you, but they will share what's going on with them insofar as als is concerned. it's a horrible disease, and it's very very hard on the care givers also.

jackie
 

CindyM

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Learn about ALS
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New England
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Anytown
Hi Chad - It is awful when they finally drop the other shoe, so to speak. THis disease proves that bad things do indeed happen to good people. You are probably reeling right now but remember you are not alone - you have great folks in your life who care about you and you have us. Take care. Regards, Cindy
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Hi Chad,

If I can add to what others have said here, my diagnosis came a few years ago. Looking back at it, the worst time was the few months following diagnosis. Even though I was relatively healthy then, the emotional turmoil of the diagnosis overwhelmed me. I slowly got my life back on track and am now living it quite enjoyably. It is largely a process of adjustment, employing technology for the disabled to the max, letting go of what is beyond you and finding and enjoying both old and new things in life that you can still do. There are lots.

John
 

CBowman

Active member
Joined
Jan 23, 2007
Messages
57
Reason
Learn about ALS
Country
US
State
Florida
City
Tampa
Thanks for the support everyone, its been a rough day today (reality set in). Been sleeping a lot and thinking of options (things that will need to be modified as this disease progresses). Hopefully the sadness will end soon.:(
 

Juanita

Member
Joined
Jun 24, 2006
Messages
16
Reason
CALS
Country
US
State
fl
City
bradenton
hi Chad,

Just wanted to say Hi & keep you chin up:-D
its a hard thing to go through, Love & hold your loved ones & try to keep strong,
Do all of the things you want to Now!
Enjoy life, eat that extra bowl of icecream!
Hugs to you & its okay to cry alot, we all did
wife of 31yrs & cals to Gary Dx. 8-6-2003
Juanita
 
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