20+ months...no answes...when /how do I just give up

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Willow

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I joined this site in Dec of 06...I have not posted very much because I have nevr bolieved have ALS. Istill don't and apart from MDA provincial rep...NO one has utterded those word/that term to me. Althoug my mother in 1957 was tikd she had it.
But I am her almost 2 yrs later still searching and lloking for answers.
I am really really angry at this time...I am so tired of being a lab rat for so many doctors. Above and beyond all of their tests, theories, guesses etc...there is ME. I am a person. I know I will not die tomorrow, I know my condition is not life threatening at this moment....but it is life altering.....but I am still me and it affects ME.
So many tests, so many doctors, so much waiting.....all I ask is for some direction. Is that really too much to ask.
I am so very very incredibly tired...tired of the pain and discomfort of all of his. It just seems to me that I am getting no where...they get to have an "unusual case" and they get to have that feeling of "of wow" something else...gotta look into this".
I used to be like that...I would wake each day and look at each day as a wow...I wanted to live it...but now...I know longer look at life that way..I am seeing in my futute that there is no now longer any wow and enjoyment/living.
As an artist through my soul...I can no longer paint...I am lucky to be able to right my name legibly..another love of mine was gardening...but I can no longer put that shovwel into the ground........so now who am I now. Who the HELL AM I!
What is the point of all this......since I am such a "unique medical dilema" and NO ONE wants to step up and even give a hint as to what to do to make MY life easier...........then whats the point...I should just off myself now while I have some sense of at least I tried.
 

olly

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i really feel bad for you as ive been waiting years for a diagnosed. everything else has finally been ruled out except als or pls. hope to finally find finally soon. i feel alone and find it hard to cope too and have had bad times when i am tired of it all and feel like topping myself ,but im a fighter and this is just another bad thing to cope with as a lot of other stuff in my life.my 13 yr old cat died in october and im still greiving badly. but i always think there are much worse off people in the world than me. i know its a cliche saying but it does help and puts things in prospective. i loved gardening and cant do it now but i still grow plants from seed and grow veg seeds for people. you have to adapt but not give up. i hope this helps a bit , please dont give up and take care of yourself
 

C.F.

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I feel for you.......nothing I could say would help, but I'm glad you have this place to vent your feelings, and people who care and can relate. At least I hope that helps. Crystal::?:
 

vmd

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willow:

I sent you a private message. I hope you don't mind.
 

crystalkk

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willow,

I think alot of us on here feel the same, our lives are changing daily with no answers.
then to think hereing the dr say go live your life and stop worrying what is going on....
Did you ever get your last muscle biobsy results back from the post in dec.
 

Willow

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DX MND
Diagnosis
04/2012
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Thank you all for the kind words and thoughts. I was just having a very bad day/time with all this and like you said...today is another day and we must move on as best we can.
To answer your question about the biopsy...no I am still waiting...that is partly what made things worse the other day. That and another hope of this being a more treatable condition being dashed. I had yet another MRI in the hope this may be sciatic problem but unfortunately the results show that the nerve is fine.
Thanks again....sorry just been having a hard time with all this lately.
Take care.
 

C.F.

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tell it like it is......

:?:Willow, you have every right and should not be sorry for expressing your frustrations! I admire you for picking up and moving on one day at a time. Hugs, CF (Crystal)
 

CindyM

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Hi Willow. Sems we have a lot in common. It does get overwhelming at times. Glad you are feeling better today. Cindy
 

lhagsjr

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I wish...

either of the 2 things would happen:

1.) I would get better

2.) I wouldnt wake up in the morning one day soon.


***This is excrutiating.
 

vmd

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Yes, those of us waiting for a diagnosis are suffering. Yet, everyday, there is something positive in my life, as I am sure there is in yours. Those that have been diagnosed are my role models because of their capacity to enjoy life and live life, even under trying circumstances.
 

Willow

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Joined
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DX MND
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Thanks again everyone for the kind words, prayers and encouragement. Since I haven't posted much maybe I should take a moment to update what had/hasn't been going on in the last 20 months. Maybe it will enlighten others or maybe someone here can give me some direction.

A bit of family history...mother was told while pregnant with me that she had ALS. She even underwent a termination of pregnancy under advisement from doctors 2 yrs later. We have the medical letters in regards to this. She underwent many spinal taps etc that I remember from my childhood. She needed assistive living and died of a brain tumour roughly 30+ years later. Never a firm modern day diagnosis was made.
I also have a sister who has some sort of neuromuscular condition that she has had assistive living for 15+ years. She would not undergo many of the tests because of bad memories of our mother and what she went through. She has never had a diagnosis. Recently she had both legs amputated from complications with diabetes.

I started out with a lump in my calf, got larger more painful...after seeing an ortho doc had an MRI and discovered that most of my calf muscles are atrophied. The lump was actually the good muscle that is being over stressed. At first they told me it was some sort of muscular dystrophy.
I have seen 2 orthopedic specialists, a nerousurgeon, a geneticist, 3 neurologists and have had 3 NVC/EMG's and 2 biopsies (one of which has been re-tested by 2 other specialists)
There is doctor and MRI documented wasting/atrophy of my right calf, now my right thigh,buttock, my left calf, both feet, hands and temporal. There is also documented progressive weakness and fasciculations.
We are currently waiting for my last biospy results. I was told 1-8 weeks but we are now in the 11th week with no word. I did however get my EMG report today but it is just a page of numbers that my GP and I have no idea what they mean...there was no letter report with it.
Next week I see my GP again who I hope will have gotten more results or ideas. I also go back to physio again and will be seeing an eye doctor in regards to floaters/black spots.
So that's me ..... waiting. I do thank you all for the words of encouragement...they mean a lot.
 
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