seth1977
New member
- Joined
- Dec 27, 2006
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- MS
- City
- Ridgeland
My mom is going to turn 50 in a few weeks.
In 2003 she began having "spells" where she would pass out. This was followed by weakness on her right side... Which caused her to start scouring the markets for fatter pens, cause she just couldnt grasp the regular ones.
She began going to her regular doctor, and he proceeded to name and diagnose everything know to man.
Finally, at the end of 2004, he referred her to a nuero doc, and that DR referred her to a more localized specialist, they were leaning towards MS at the end of 04, beginning of 05.
05 brought a new doctor, one who would through out some new diagnosis, some new painful test... and more cluelessness.
Finally she was referred to the physicians group she is seeing now.
Primarily, they diagnosed Lou Gehrigs disease, but through a new battery of tests, ruled it out, and said that it could only be ALS, because they had ruled EVERYTHING ELSE OUT!
What is this? We dont know what it is, we just know the 500 things it cant possibly be... I have read on countless websites that diagnosis of ALS is diagnosis by exclusion. Her doctors tell me there is this study going on up north somewhere, and they are trying to get her in, not cause it will help her, but because it could help someone else, down the line.
My mother is fiercely independent, but she is slowly losing the battle against whatever it is attacking her. My brother is 18, with a baby, and my sister is too stuck in herself to help. So its my mom, and me.
Taking care of mom, helping mom, its all the same thing, its something I have to do, I love her. I cant leave it up to strangers.
Her independent streak causes no end to problems tho.
I have to make it a point to call her everyday, cause if she needs something, she wont tell me. (I found this out after she hadnt eaten in a day and a half cause she wouldnt tell me she needed groceries)
She wont let me stay with her, or anyone else for that reason. She come live with me... and anytime I call her, and she doesnt answer, I drive at breakneck speeds the 20 miles from her place to mine, to make sure shes ok. Which was good two weekends ago, she had fallen and broken her hand...
She is spastic, and cant maintain balance, chokes on food, and on drink, and has very slurred speech.
Her decline seems rapid to me. I thought the end was soon cause of all that was occurring.
Her doctors have been playing musical meds too... Most recent changes was the reintroduction of baclafin(?) when she was getting to where she couldnt walk, or sleep, or much of anything else.
Can someone give it to me straight?
What else do i have to 'look forward' to?
Is there anyone anywhere near me going thru something similar that I could talk to.
This strained my last relationship past the breaking point, and I dont dare bring anyone else into my life at this point.... So its just me and her here....
Help.
In 2003 she began having "spells" where she would pass out. This was followed by weakness on her right side... Which caused her to start scouring the markets for fatter pens, cause she just couldnt grasp the regular ones.
She began going to her regular doctor, and he proceeded to name and diagnose everything know to man.
Finally, at the end of 2004, he referred her to a nuero doc, and that DR referred her to a more localized specialist, they were leaning towards MS at the end of 04, beginning of 05.
05 brought a new doctor, one who would through out some new diagnosis, some new painful test... and more cluelessness.
Finally she was referred to the physicians group she is seeing now.
Primarily, they diagnosed Lou Gehrigs disease, but through a new battery of tests, ruled it out, and said that it could only be ALS, because they had ruled EVERYTHING ELSE OUT!
What is this? We dont know what it is, we just know the 500 things it cant possibly be... I have read on countless websites that diagnosis of ALS is diagnosis by exclusion. Her doctors tell me there is this study going on up north somewhere, and they are trying to get her in, not cause it will help her, but because it could help someone else, down the line.
My mother is fiercely independent, but she is slowly losing the battle against whatever it is attacking her. My brother is 18, with a baby, and my sister is too stuck in herself to help. So its my mom, and me.
Taking care of mom, helping mom, its all the same thing, its something I have to do, I love her. I cant leave it up to strangers.
Her independent streak causes no end to problems tho.
I have to make it a point to call her everyday, cause if she needs something, she wont tell me. (I found this out after she hadnt eaten in a day and a half cause she wouldnt tell me she needed groceries)
She wont let me stay with her, or anyone else for that reason. She come live with me... and anytime I call her, and she doesnt answer, I drive at breakneck speeds the 20 miles from her place to mine, to make sure shes ok. Which was good two weekends ago, she had fallen and broken her hand...
She is spastic, and cant maintain balance, chokes on food, and on drink, and has very slurred speech.
Her decline seems rapid to me. I thought the end was soon cause of all that was occurring.
Her doctors have been playing musical meds too... Most recent changes was the reintroduction of baclafin(?) when she was getting to where she couldnt walk, or sleep, or much of anything else.
Can someone give it to me straight?
What else do i have to 'look forward' to?
Is there anyone anywhere near me going thru something similar that I could talk to.
This strained my last relationship past the breaking point, and I dont dare bring anyone else into my life at this point.... So its just me and her here....
Help.