Slaughter.. - Amyotrophic Lateral Sclerosis (ALS) Message Board

reneeintx · 06-06-2003, 01:04 PM

How come it took two years for your father to be diagnosed??? Was ALS just far from doctors minds because it's not very common??

I'm curious because I visit another site where we are all twitchers and believed we had ALS, because of twitching and "perceived" weakness.

Some of the forum members get a clean emg and still can't convince themselves they don't have this disease.In the meantime their lives are turned upside down, until they put some faith in their doctors.

I'm so sorry that your father has this disease

Renee

slaughter17 · 06-06-2003, 03:19 PM

well....my dad started to have his symptoms in 99. It started in his legs and feet. He noticed there was weakness and cramping pains up his legs. He thought nothing of it until he was put in hospital for a staph infection in his knee. Then the symptoms started to worsen. He went to many different doctors. It took about 18 months to finally get the diagnoses. By then his legs had atrophied and his feet were almost useless. I remember staying up all night some nights, researching his symptoms. My brother and I had it down to Lyme and ALS. I would go to his appointments and request certain tests done. But, because of insurance reasons, and the doctors were to proud or something. They just didn't like it when I would bring up what I had researched. It took a long time to find the right doctor. And actually getting an appointment with them was a joke. We would wait for weeks or even months to see one. At first they tested him for Rheumatoid arthritis, then for MS, and all other diseases needed to be ruled out before they would make ALS an option. So the whole ordeal was time comsuming. All the other tests were taking up a lot of time. Fianlly on August 3rd of 2001 he was diagnosed with ALS. He has gone down hill fast since then. He now uses a BIPAP at night and during the day to breathe, PRN oxygen, and now in a wheelchair. We just recently have Hospice, (a company who helps us with his care) coming in and out of the house taking care of him when we are not available. ALS is getting more and more common. It is a very hard disease. I was up until a month ago my father's full time care giver. Now that the rest of my family has excepted it there is much more support. Thanks for your concern. I pray for a quick death for me, when it is my time to go.

Nirvana_fan · 06-07-2003, 09:02 PM

Wow i really admire how you did all that for your dad. I didn't do anything like that for my mom and i feel extremely guilty and useless. I was never ready for this and i know no one ever is but i've never been the type of person to handle this. Its so hard. i'm gonna try to step myself up from now on and try to do something. peace.

reneeintx · 06-08-2003, 05:27 PM

Slaughter~ what a good person you are

Your dad is so lucky to have you and your brother.

Sometimes the doctors don't want to diagnose ALS until they absolutely have to(from what I've read) I'm sure they don't want to say someone has it and it turns out to be lyme or ms.

You and your dad will be in my prayers.

Take care of yourself too. I know caring for someone with a "bad disease" can take it's toll on the caregivers.

Renee

BTW~I don't know how Stephen Hawkings has lived this long with ALS, it's mind-boggling.

jinglebts · 07-30-2003, 04:22 PM

slaughter,

isn't hospice a saving grace? my mum (she died of multiply myelome) refused it 'til the end -- she was on tylenol 3's, for god's sake -- hospice could have dealt so much better with her pain ...

you are kind and loving, and your dad must be looking down and smiling at you, altho' it's an awful situation to be in -- the deaths of those with ALS are dreadful ...