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CBowman

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Hello everyone, today is a sad day. I am at the Mayo clinic for a second look opinion on my diagnosis of ALS. Well my family and I met with the nerologist (no names for protection) told him my story of starting symptoms on 9/25/06 till now being wheelchair bound. I also told him of my recient breathing problems but thought they were pollen, anxiety, and maybe a little ALS but the past two nights I coulded sleep because of the breathing issues. After his physical exam and everthing, he told me I was at the end of this disease and have 6 months left to live. I was shocked 6 months into my ALS symptoms and he said I had 6 months left to live................ I thought he was going to say that I needed a bypap, but 6 months to live. I am 34 years old and freaked. My breathing is bad, but 6 months left to live. I hope he is wrong. :cry:

Shocked and Devistated
Chad
 

lunarruna

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Chad---Well, we are sooo sorry to hear your news, what a blow for you. This disease sucks.

I guess I am surprised to hear your doc put such a time frame out for you....as it can be so variable. Also, people can live for a relatively long time on bipap....just look at Mike (Quadbliss) on this site---he stretched out his bipap time to two years! So, I am not trying to contradict your doctor, but I just want you to know that many people have had different experiences than their doctor predicted. I am very glad you know about this cite and so you can read up on others experiences and also get lots of support. There is also a good yahoo site, Living with ALS.....
http://health.groups.yahoo.com/group/living-with-als

We are all with you as you accept this grief, but we will also be here to help you stay as healthy and happy as you can for as long as you can. Attitude is so important and you sure seem like a strong person.
.....You take care, Beth
 

midwestgirl

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Chad, I am so sorry to hear your diagnosis. There are no words that seem adequate at a time like this. Remember that doctors can not predict exact time, it may be longer. My thoughts and prayers are with you for the strength to enjoy each and every day.
 

hboyajian

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Chad, I am so sorry to hear how rapidly this is progressing for you. That must have been a terrible shock for you and your family. However, I agree with the others that no doctor can put out a sure time frame for your life. Also, there are choices that you can make to potentially extend your life. I think bi-pap is one of them, and I find it unusual that the doctor did not mention this option.
Did they do a pulmonary function test? It is the loss of function in the muscles that operate the lungs that is the cause of death in many ALS patients. The other is loss of ability to eat and drink, but this can be taken care of with a feeding tube. I do not know the details of your condition, so maybe you already have one. They should, imho, also do blood tests for oxygen and carbon dioxide levels as not enough of the first and too much of the second can indicate imminent deterioration of your ability to breathe on your own.
Also, if indeed your lung function is approaching a severe level of impairment so as to require artificial ventilation, I believe this option should be presented to you by your doctor and discussed honestly. Only you and your family know if this is something you want to consider, and it may take time to work out the details of the 24 hour care you would need.
I hear your concern about wrapping up the details of your working life. That must also be extremely difficult. Is there anyone who can help support you through this? You are probably the only person who knows what to do if you own your own business, but maybe someone can go with you, and you can direct the action from a comfortable chair.
I helped my dad sell his business 2 years ago when his ALS symptoms were getting pretty bad. It was too exhausting for him to do alone.
 

Al

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Hey Chad. I really don't know what to say other than I have never heard of a Doctor giving a timeline like that. Bipap is an option or a vent. Did they even discuss that with you? Think positive and keep fighting. Ask to see another Doc at the clinic if you have to. This sounds screwy to me.
AL.
 

MagnusD

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Keep strong and positive bro...
Praying for you
 

CBowman

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I am also in the process of getting a bipap. I am in a sleep study right now, I had the blood test yesterday, and the FVC test yesterday. The plan is to get me a bipap tomorrow.

My entire als experiance has been fast, my breathing is also going at a rapid rate. This is very scary to be given 6 months by one of the top neros at Mayo Clinic in MN. Its not like some quack nero gave me 6 months..........

Devistated and Scared
Chad
 

ltr

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Hi Chad,

Forget he said that and get on with your life. Why did this doc say this to you? Did you ask him how long he thought you had? Docs don't usually say something like this unless the patient wants to know because of the impact it can have on you mentally, but especially physically. Your mind can be the power to live longer and almost all docs believe this. I know the hospitals I worked at in my city, they all believe this as a medical fact. So, please, as devastated as your are, try to put that statement away and put effort into proving him wrong. I am praying for you to have the strength. Leslie
 

liz

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Chad -

Is it possible the doctor gave a six month time frame to make you eligible for hospice care?

Either way, I'm so sorry to hear how fast your disease is progressing. I can only imagine how difficult this must be for you and your family.

Liz
 

hope

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chad,

Our hearts go out to you. I am sorry you are in this horrible disease. My husband has als and is very ill, the words do not come easy. We are holding on and praying very hard that a cure will soon be found. Please know you are in our thoughts.

hope.
 

Sunshine

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Hi Chad, I am so sorry to hear that. I pray that the doctor is wrong. My prayers and thoughts are with you and your family. Sunshine
 

joelc

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Chad, please don't let him talk you into only having 6 months! Prove him wrong!
I am into my last 3 weeks of my 2 month diagnosis and do not plan on making their prediction come true! I am on a bipap now and it is breathing new life into me - I plan on being around years from now and watching all the doctors and neurologists eat their words.
Be careful of anxiety as well, it can make things seem so much worse than they actually are. Monitor yourself and how tense your body is, then try to totally relax. It could help a lot.

You are in my prayers! DON'T GIVE UP!
 

caregiver0204

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Hi Chad, love your name.
My husbands Dr. gave him 6 months to live over two years ago and he is not on a Bi-Pap. Wishing you the best.
 

JenniLee

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Unacceptable

Hi Chad!

I must apologize because that doctor's words are unacceptable to me. He does not have the power to foretell that. He may have an opinion based on experience, but my friend, this is your experience not his. I agree with Leslie & Joel....PROVE HIM WRONG!

Go for another opinion. It doesn't even have to be in state. Make an adventure out of it if you have to with your family. But go see another...not so you can hear what you want to hear, but, just for you.

Regardless, and eitherway, do you understand what this "condition" means? It means it is time to "condition" yourself. Take care of yourself! Not the "diagnosed". But YOU! Take care of your heart, soul and mind.

I re-write his diagnosed to say "you have 6 months to take the best care of yourself that you can and we'll see you back then". So, dear Chad, go to a retreat or spa. Get a massage, get some accupuncture, go to an energy healer....anything you can think of to help health your mind.

I am not saying you are not allowed grief...I know that feeling....feel it and respect it, then work with it. Don't ignore it, just put the grief aside when you're ready and meditate on you, your health, your most magical place to be, your family, whatever it takes to feel soothed.

It's all about you!
Jen:)
 

bogey

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chad- keep your spirits up that doc is not god,they are like weathermen there wrong as often as there right.my friend darryl was told in 1996 he had 1 to 1.5 years and its 2007 and he's still here. bogey
 
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