notBrad
Senior member
- Joined
- Feb 26, 2015
- Messages
- 632
- Reason
- PALS
- Diagnosis
- 04/2015
- Country
- US
- State
- OR
- City
- The coast of
Hi All,
First off - THANK YOU for that sticky! It is a sanity saver.
I'm pretty sure I do NOT have ALS due to a number of things that would contradict a diagnosis BUT it seems like the only thing the Doctors I'm dealing with want to discuss.
So what I'm looking to find out from the knowledgeable folks here is what questions and comments I can use to get them thinking about other things? I live in a fairly rural/isolated area so it's not as though I'm dealing with physicians who see a lot of different things.
Here's the situation. The only things that I've had that would lead them to think of ALS is the following (I've included why I think it's a red herring):
1. Some speech issues that started with some slurring but now resemble Spasmodic Dysphonia more than anything else. Reason I don't think it's anything to do with ALS is because it comes and goes, only really kicks in when I'm nervous or tired and I can "over-ride" it quite often.
2. Fasciculations in both shoulders and triceps. They are bilateral and almost mirror images from side to side so I think they're more likely due to some sort of injury (re: RSI, etc...).
3. Weakness in my arms. Again comes and goes, no atrophy, taking a Xanax actually seems to make it go away and most importantly it was at one time really bad (couldn't even un-button jeans, etc...) but then I quit taking my BP meds which had side effects of Hypoglycemia and dehydration and my strength improved SIGNIFICANTLY.
4. I have Hyperreflexia in both knees BUT only there and it is bilateral and has always been that way to some extent.
Babinski reflex is NOT present in either foot.
Had an EMG and the Doctor said there was some nerve damage but didn't specify where. My GP said it mentioned something about a 20 percent difference in the Nerve Conductivity part and something about Multifocal Nueropathy ( I got the distinct impression he didn't know the difference...).
So what things can I bring up to get these people looking at other things, tests, etc... besides ALS? My fear is they'll miss something that could have been identified and addressed earlier because they are so focused on it being ALS.
I mentioned how rare it is (ALS) and got the response of "Well, it's not rare if you have it". I brought up BFS and had that immediately dismissed as being unlikely ( even though I think my symptoms point more to it than to ALS ).
Sorry for the long post, some amount of frustration here... Thank you again for the Sticky and any suggestions on how to get the physicians I'm dealing with to broaden their scope some.
First off - THANK YOU for that sticky! It is a sanity saver.
I'm pretty sure I do NOT have ALS due to a number of things that would contradict a diagnosis BUT it seems like the only thing the Doctors I'm dealing with want to discuss.
So what I'm looking to find out from the knowledgeable folks here is what questions and comments I can use to get them thinking about other things? I live in a fairly rural/isolated area so it's not as though I'm dealing with physicians who see a lot of different things.
Here's the situation. The only things that I've had that would lead them to think of ALS is the following (I've included why I think it's a red herring):
1. Some speech issues that started with some slurring but now resemble Spasmodic Dysphonia more than anything else. Reason I don't think it's anything to do with ALS is because it comes and goes, only really kicks in when I'm nervous or tired and I can "over-ride" it quite often.
2. Fasciculations in both shoulders and triceps. They are bilateral and almost mirror images from side to side so I think they're more likely due to some sort of injury (re: RSI, etc...).
3. Weakness in my arms. Again comes and goes, no atrophy, taking a Xanax actually seems to make it go away and most importantly it was at one time really bad (couldn't even un-button jeans, etc...) but then I quit taking my BP meds which had side effects of Hypoglycemia and dehydration and my strength improved SIGNIFICANTLY.
4. I have Hyperreflexia in both knees BUT only there and it is bilateral and has always been that way to some extent.
Babinski reflex is NOT present in either foot.
Had an EMG and the Doctor said there was some nerve damage but didn't specify where. My GP said it mentioned something about a 20 percent difference in the Nerve Conductivity part and something about Multifocal Nueropathy ( I got the distinct impression he didn't know the difference...).
So what things can I bring up to get these people looking at other things, tests, etc... besides ALS? My fear is they'll miss something that could have been identified and addressed earlier because they are so focused on it being ALS.
I mentioned how rare it is (ALS) and got the response of "Well, it's not rare if you have it". I brought up BFS and had that immediately dismissed as being unlikely ( even though I think my symptoms point more to it than to ALS ).
Sorry for the long post, some amount of frustration here... Thank you again for the Sticky and any suggestions on how to get the physicians I'm dealing with to broaden their scope some.