rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
This is the first time I've waded down through all of this thread..... here are some thoughts...
Re: House (LOL) that show tends to make me crazy. Just because IN AN HOUR this show can diagnose the patient where as I was in Limboland for so long. ~ For at least a year, my docs were saying "autoimmune" to me, and then if I flipped on House, they were always throwing that term around! My friends and family were telling me that "my" case was going to end up as an episode on House or Medical Mysteries one day, and I'd reply, (none of this is serious conversation, by the way) I'd say not House, because my symptoms didn't happen rapidly enough, but I might have a shot at Medical Mysteries It is entertaining and it does certainly bring to the forefront public awareness of all of the sick people out there that don't have "text book" symptoms of anything. I swore off watching it for a while but have slipped back into it, although I missed the season premiere.
Re: Al.... this man's wisdom is a Godsend. His style with dealing with people and situations is consistent. Not only is he well educated in what MND is, but I feel he shows good judgment in applying that knowledge to how people on here present themselves, not just with what their symptoms are, but how they are coping with their own situation emotionally.... and for those that have something wrong, but aren't finding solace or useful information to help themselves cope, but rather the exact opposite ~ scaring themselves silly, and acquiring new symptoms for themselves the more they read what has been posted ~ these people I've noticed that he does his best to steer away from the very thought of ALS. It is absolutely in that scared person's best interest that he do that. I'll bet that if this were a purely social forum, Al would be there encouraging everyone to stay around, and enjoy the fun... have a glass of something nice.... heard any good jokes lately?.... let me show you the pictures of the grandkids....
I, like probably virtually everyone on here, read on the forum for a long time before I ever posted. Well, long is a relative term ~ I read for a few weeks after joining before posting. Anyway, I remember so clearly when I hit that "submit reply" button the first time, really hoping that Al would respond (I'd given my medical history) and he would basically tell me that it didn't sound anything like MND, and to go outside and play, little girl LOL .... Hey Al, I'm still waiting for that, by the way :smile:
Next point.... Wright is basically volunteering his time on this forum, and his ability to decipher medical jargon and test results has been a real personal blessing for me. And, as he teaches full time, it isn't as though he has hours to spend with us, and he definitely shouldn't be expected to remember the particulars of each of our histories.
Last point.... I echo the other sentiments that the mindset is key. That isn't to say its anything other than completely human to want to feel sorry for ourselves, to have "a moment" - but regardless of what the illness or situation is, wallowing in despair will get no one no where ever. period. I hope you get some answers, you obviously have something wrong, but let your doctors ability to understand what test results and symptoms mean be what guides you, not research on the internet. If you find information on the internet that you think is pertinent to your situation, then bring it up with your doctors, if it raises a possibility in their mind when you call it to their attention, they're not going to purposefully ignore it. If you have discussed it with your doctor(s) and they say no way, you don't fit the parameters, then that is what you need to focus on. and yeah, the unknown is unbelievably hard, and people at large - family, friends, co workers, they don't get it. They don't see why its taking you so long to find out what is wrong with you (because when they watch House he gets it solved in an hour) . Best of luck to you, keep your chin up and think about how you're going to win the fight. winning is good. :smile:
Re: House (LOL) that show tends to make me crazy. Just because IN AN HOUR this show can diagnose the patient where as I was in Limboland for so long. ~ For at least a year, my docs were saying "autoimmune" to me, and then if I flipped on House, they were always throwing that term around! My friends and family were telling me that "my" case was going to end up as an episode on House or Medical Mysteries one day, and I'd reply, (none of this is serious conversation, by the way) I'd say not House, because my symptoms didn't happen rapidly enough, but I might have a shot at Medical Mysteries It is entertaining and it does certainly bring to the forefront public awareness of all of the sick people out there that don't have "text book" symptoms of anything. I swore off watching it for a while but have slipped back into it, although I missed the season premiere.
Re: Al.... this man's wisdom is a Godsend. His style with dealing with people and situations is consistent. Not only is he well educated in what MND is, but I feel he shows good judgment in applying that knowledge to how people on here present themselves, not just with what their symptoms are, but how they are coping with their own situation emotionally.... and for those that have something wrong, but aren't finding solace or useful information to help themselves cope, but rather the exact opposite ~ scaring themselves silly, and acquiring new symptoms for themselves the more they read what has been posted ~ these people I've noticed that he does his best to steer away from the very thought of ALS. It is absolutely in that scared person's best interest that he do that. I'll bet that if this were a purely social forum, Al would be there encouraging everyone to stay around, and enjoy the fun... have a glass of something nice.... heard any good jokes lately?.... let me show you the pictures of the grandkids....
I, like probably virtually everyone on here, read on the forum for a long time before I ever posted. Well, long is a relative term ~ I read for a few weeks after joining before posting. Anyway, I remember so clearly when I hit that "submit reply" button the first time, really hoping that Al would respond (I'd given my medical history) and he would basically tell me that it didn't sound anything like MND, and to go outside and play, little girl LOL .... Hey Al, I'm still waiting for that, by the way :smile:
Next point.... Wright is basically volunteering his time on this forum, and his ability to decipher medical jargon and test results has been a real personal blessing for me. And, as he teaches full time, it isn't as though he has hours to spend with us, and he definitely shouldn't be expected to remember the particulars of each of our histories.
Last point.... I echo the other sentiments that the mindset is key. That isn't to say its anything other than completely human to want to feel sorry for ourselves, to have "a moment" - but regardless of what the illness or situation is, wallowing in despair will get no one no where ever. period. I hope you get some answers, you obviously have something wrong, but let your doctors ability to understand what test results and symptoms mean be what guides you, not research on the internet. If you find information on the internet that you think is pertinent to your situation, then bring it up with your doctors, if it raises a possibility in their mind when you call it to their attention, they're not going to purposefully ignore it. If you have discussed it with your doctor(s) and they say no way, you don't fit the parameters, then that is what you need to focus on. and yeah, the unknown is unbelievably hard, and people at large - family, friends, co workers, they don't get it. They don't see why its taking you so long to find out what is wrong with you (because when they watch House he gets it solved in an hour) . Best of luck to you, keep your chin up and think about how you're going to win the fight. winning is good. :smile: