Why to look for a diagnosed ?

[Zaphoon]

Its not just about diagnosis; its also about prognosis! How much more is this thing going to debilitate me? Is it curable, treatable or will it wind up putting me on disability?

This is why most of us continue to pursue an answer. I have an overwhelming desire to stop this ever-spreading weakness and get back to full strength. If this is not curable but treatable, shoot me up! (or however treatment may need to be administered).

My God, man! I can't let this thing wander around my body as it pleases! I'm going to kill this thing, stomp on its face, throw it in the fire and scatter its ashes! I will not be passive with something that has chosen to overtake me. This thing snuck up on me and has since locked both shoulders, put my legs in a constant spastic state, monkied with my reflexes and is trying to steal my voice. I'm going to kill it and kill it good!

I am at war! And I have a good neuro by my side that is developing strategy and ammunition with which to aid me in killing this unkown, un-named infiltrator!

(I'm off to listen to my favorite marches and anthems)

General Zaphoon

 

[ZenArcher]

Why anyone would chose ignorance over knowledge is beyond me. Personally I find this whole thread both insulting and foolish.

He who asks a question is a fool for five minutes; he who does not ask a question remains a fool forever.

 

[olly]

can i butt in?
firstly my search for a diagnosed was so i could get treatment and be back to my normal self or so i thought.
i went through some years of repeat testing with mri,s ,eeg,emg,nvc and a few pints for blood tests.
it was hell but had to be done,even the neuro at the mnd clinic said my neuro had done more than enough testing to rule other things out.
there are some with severe disability and in wheelchairs who never get a diagnosed,they can not find whats wrong or put a name to there illness and i feel so sorry for these ones.
diagnosed brings closure to the testing and what is it so you can move on,so a early diagnosed is a better one.

 

[4rhl1981]

Good post. Heres' my take-
For some, labeling things or having a name to what they are facing is a VERY important aspect. The fear of the unkown can haunt even the most upstanding, educated and studious people on the face of the planet. Many people cannot readily accept that which they do not know. (though I am at this point now) It is what it is.
Its like having an elephant in the closet and not being able to introduce it.... ( Randy Pausch rocks!)
If you know what your up against, it relieves some of the worry-if it is treatable or managable - you can move forward with treatment.

AND----for some a definite diagnosis can mean they can quit furthering their misery by pushing themselves too hard at work and apply for disability. ( I am also at this point)

This exactly how I feel, I could not have said it (or typed) it better myself! This what I was trying to say in one of my threads (Sorry must post).

 

[sdsyd]

As I read over this thread it really is stirring something inside of me.
As we search for answers we often find more questions. Whatever "IT" is that is attacking my body ( though thankfully not my spirit) is something I would never have DREAMED..or imagined as a part of my life plan. Its like some thing is trying to pull the rug out from under my feet. 2 years ago I was on the roof of our house re-shingling after a terrible hailstorm and flood. How many women do you know that can remove two layers of shingles with a roofing shovel? less than one year ago I was transferring people with severe physical diabilities in and out of their wheelchairs/beds. off their toilets...etc. then I would take them to the gym and put them on a mat and fight like hell to help them rebuild or compensate for their weaknesses never doubting my own strength for a minute....... Fast forward to today. I have bought pump style shampoo and conditioner so I dont have to hold the heavy bottles. HEAVY BOTTLES OF SHAMPOO AND CONDITIONER>
Do I want answers? Hell yes I want answers.
Not because I am one of those "WHY ME? people. I am one of those " Why NOT me?" people.

If I find something to treat I will treat it agressively (like zaphoon said so valiantly)
If it disappears overnight- praise to God for the journey He has put me on and the awareness he has created within me.

Sorry to rant, but the more I read this thread the more I want to write.

Love u guys-

Cindy

 

[ptich]

I was a bit put off by ZenArcher calling this thread "insulting" (I care less about "foolish"). At the very minimum, it was not intended as such. And I don't see how it is insulting to anybody. What's wrong with discussing if mild neuro-muscular symptoms should be vigorously pursued or not ? There are obvious dangers and negative moments, like:

1. Possibility of a false ALS diagnosed

2. Possibility of ALS diagnosed many years before serious symptoms develop

3. It is very expensive

4. There are many unpleasant procedures involved

There are others who posted their opinions in favor of pursuing a diagnosed, which is great, that's what a discussion is for. I really see nothing "insulting", though...

 

[CindyM]

I, for one, like this thread but then I like a good discussion and am happy to see we've all recognized each other's right to a conflicting viewpoint.

I was, though, kind of waiting for what I thought might really lie behind Pitch's question: at what point do you give up the trips to the lab and doctor's, especially if these trips produce nothing but financial expense and aggravation.

I have asked each doctor for a longer period between check-ups. I do want to monitor my breathing, (that sounds kind of important, LOL) but I really cannot see myself listening, again, to someone in a white coat tell me they do not know what is wrong or why these things are happening to me. But then again, I have gotten used to my symptoms so it is easier for me to live with them.

 

[brendapals]

ptich,
Whew! I have fatigue just from all the reading!

First of all, it is a person's own personal choice when to go to the dr, which dr to go to, and so on. One can ask others for opinions, advice, thoughts, and so on. My biggest concern would be what does it matter to you if someone is diagnosed, or is not diagnosed, all of us are given one chance at living, none of this is practice, thus, we move on with each new day and live it as it were the last.

I truly mean no harm, but please, let it go.

 

[CindyM]

Yep- I guess we stirred things up, without having them blow up, LOL. We could analyze this topic to death but still not come up with solutions, at the end of the day.

Time for a cup of hot chocolate. (I'd say Merlot but they don't allow that during work hours. :wink

 

[Willow]

I don't post often but thought I would respond to this thread which I have found quite interesting.
I have spent the last 2 1/2 yrs searching for a diagnosis. I have had MRI's, EMG's, NVC's, biopsies, blood work, and many appointments with many specialists only to be told they do not have an answer. I have been told that I apparently have two disease processes going on. A disease of the nerves and a disease of the muscles, but they can not give it a name at this time and I am looking at some form of MND, but again no name.
So after all this time why do I keep searching? I will be honest there are times when I do feel like giving up, but for the most part I move forward. If I have something that is treatable and I didn't keep searching then where would I be? I want to treat (beat) this what ever it is. There is also a strong probability that whatever this is runs in my family....so for my children/grandchildren, I can't just stop looking. To be able to put a name to this would give it some sort of "closure" and dig my heels in deeper. As someone said "it's like having an elephant in the room and not being able to introduce it"...explains it perfectly to me!

 

[crystalkk]

Hi Willow,

How have you been? I am going through the same thing 2 to 2 1/2 years without a name. And keep hearing I don't know what you have. What are your symptoms? How are you emg's? All of this is so nerve racking, and people don't understand the whole process. This is the only place I can come and talk about what is going on.

Hang in there,

 

[CindyM]

Yeah- I probably will go back to searching for answers at some point.

I kept saying I was going to go to another MND clinic (Boston has a couple) but I was going to wait until "something dramatic" happened. Then they found reduced respiratory function and still cannot explain why, other than "the weakness in your leg muscles has moved to your chest."

I am feeling pretty good now that I am on a bi-pap. Good enough to let it rest for while. Once I decided it cannot be ALS, I felt like I have more options. For one thing, I feel like I have a few good years left to solve this. I guess I just need a rest from tests and doctors visits that offered no results.