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Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
I first get a doctor that has me coming back time after time with no answer . And then saying "i dont know what you have " Then i get one, that after 1/2 hr.of examination and before tests "youll be dead in 2 years ". The next one says "we dont know what you have but come back in 6 months so we can watch your progression "? Then i get one that has the personality of a Wooden Board and throws my application To Hational Institutes of Health away "saying he didnt think it was neccesary " Then i get one that has all the latest in equipment to do my spinal tap (exrays ) and still hits my Nerve root in my spine when doing the tap . Then after all the enormous medical bills MDA wants me to donate a large sum of money . Then i go to a hospital with breathing issues and after laying there 12 hours i get told "We cant help you here " so i said good next time i'll just stay home and die . Then i get invited to be in a Blood study at Northwestern University ,they send me the Vials ,i go to Quest Labs Northwestern wanted them to donate the Phlebotomy (blood draw ) they said no . Next one i go to my Doctors office and see if they will donate their Phlebotomy (blood Draw ) they say No . So one has to wander WHO REALLY WANTS A CURE ? It really makes one wander why it takes so long to get any cure at all . I had One Compasionate Doctor out of over 40 who cared enough to pat me on the back and say he was sorry i have this disease . Geo
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Geo, you know I noticed that myself. I wonder if these doctors are telling the truth, that they do not know. Why are they doctors if they don't know? Sometimes it makes me feel that they (docs) are using these people with this illness as guinea pigs. I am sure they know from day 1, but they want to see for themselves how this illness progresses. The same thing happened to my son, doctors kept saying, "I dont know! I don't know! It could be a virus. It could be this, it could be that!" Then when the damn als started kicking my son in the rear, that's when they decided to go for mri's, spinals, emg's, etc., etc.! Then in 30 minutes they tell him, "You have als. At the rate you're going, we'll give you 2 to 5 years!" I wasn't all that happy the way they handled it. My son passed 15 months after diagnosed! Good luck, Geo!
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
donating blood

If you donate blood Geo, the NIH and NWU will reimburse whoever draws your blood if they will not do it for free. Just ask them.

I hear your frustration. My diagnosis took 12 years total. I have the most amazing group of doctors now who are teaching me how to take care of myself. I also am teaching them some things about how to take care of people with PLS. Go on living and keep searching. These diseases are tricky to diagnose AND sometimes you won't fit into a neat little package. I'm thinking of Cindy and AnnMarie. They keep living, keep moving on with life, keep making adjustments in how they function and as we all know, all any of us are guaranteed is the present.

Icanmanz, I started to tear up reading your own trial with your son. I have nothing to say to that except how brave and kind you are to share your experience, strength and hope with others. THank you...


All the best!
Frizz
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hi Frizz I know they pay ,But if these places(Docs,Quest Labs etc ) are so interested in Helping patients and finding cures ,There should be no question as to wether they donate the fee . I was reimbursed by NWU
And NIH was'nt for that, it was an invite to be a Clinical Trials Patient . But the MDA Doc. saw a chance to play God and did . I just cant figure how a person can get so errogant and cold . I was never brought up that way. My customers could call me at home if they had a question . You have to wander if their behavior is to shield themselves from pain by being too close to a Patient . I have a neighbor who told me he was i a large Corporation and the higher ups said NO COMMUNICATION WITH ANYONE OR DISMISSAL . If this is the case America is in big trouble . Geo
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Geo

I hear ya Geo and reguardless of what everyone else is doing...let's do our part in helping find a cure. Good job doing your part. I went through periods of frustration that no one would listen to me for 12 years. Now, they want to study me...go figure...If I stayed in the anger, it doesn't help my disease OR those around me....so I chose to move on. Take care of yourself Geo...and vent here when you need to. There are plenty of us who hear you loud and clear.

All the best!

Frizz
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hey Geo. A friends daughter lives in Palm Harbor. Is that near you. She's a nurse and I'm sure she'd get the samples for you.
AL.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
THANKS AL .HAD IT DONE LAST YEAR AND THE YEAR BEFORE . AND COULDNT HELP BUT NOTICE THE LACK OF COMPASSION ON THESE PLACES PART , ESPECIALLY MY DOCTOR . I WONT WALK AWAY FROM A FIGHT ,AS YOU KNOW . I FEEL PATIENTS DONT NEED TO BE TREATED LIKE WE HAVE THE PLAGUE . iM NOT ABOVE PATTING SOMEONE ON THE BACK AND GIVING CONDOLENCES OR GIVING SOMEONE A HUG AND OFFER A SHOULDER . I CANT SEE WHY DOCTORS CANT DO THE SAME AND ALL MEDICAL PROS . THEY HAVE TO KEEP IN MIND THIS PERSON IM TREATING HAS PROBLABLY BEEN THROUGH HELL . AND YES I DO SOMETIMES LET IT GO ,BUT MY NATURE IS TO STAMP OUT IGNORANCE AND INDIFFERNCE .I WAS RAISED TO RESPECT SOMEONE WHO HAS'NT GOT IT AS GOOD AS I . THANKS FOR THE REPLIES GEO
 
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