Toto's Dorothy
Very helpful member
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- Jan 31, 2012
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- 11/2008
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Thank you Trfogey.
Thanks for reading
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Hi Fogey-
I omitted a couple of facts from my post that may better explain the source of my concern.
First, at some point in the examination, he said that he wanted to be clear that he was "...relying on the fact that a number of ALS specialists had already determined that I don't have ALS". He didn't make clear the precise scope of that disclaimer (i.e. he didn't specify whether he based his decision not to seek a bulbar emg in large, small or no part on my having previously received an all clear from ALS specialists). I responded that those specialists had largely focused on my legs and, to a lesser extent, the lump. They hadn't focused on my complaints about general lack of motor coordination including tongue biting. He didn't respond.
Second, in the course of discussing the tongue biting, he also stated that the tongue biting "may be symptomatic of a neurological problem, but since you've already seen several neurologists, I won't refer you to another".
My question to the forum is whether, given the ENT's findings, I should press for a bulbar EMG. His election not to request one doesn't reassure me as much as it would if he relied exclusively on his own judgment in doing so.
Does that make more sense?
I omitted a couple of facts from my post that may better explain the source of my concern.
First, at some point in the examination, he said that he wanted to be clear that he was "...relying on the fact that a number of ALS specialists had already determined that I don't have ALS". He didn't make clear the precise scope of that disclaimer (i.e. he didn't specify whether he based his decision not to seek a bulbar emg in large, small or no part on my having previously received an all clear from ALS specialists). I responded that those specialists had largely focused on my legs and, to a lesser extent, the lump. They hadn't focused on my complaints about general lack of motor coordination including tongue biting. He didn't respond.
Second, in the course of discussing the tongue biting, he also stated that the tongue biting "may be symptomatic of a neurological problem, but since you've already seen several neurologists, I won't refer you to another".
My question to the forum is whether, given the ENT's findings, I should press for a bulbar EMG. His election not to request one doesn't reassure me as much as it would if he relied exclusively on his own judgment in doing so.
Does that make more sense?
laurel
Very helpful member
- Joined
- Jul 19, 2007
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- 1,436
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- 07/2007
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Hi Vex,
I have read everything that you have written. Please listen to Allen (TRfogey) he has tremendous knowledge and would not lead you astray. You are starting to somatize everything now. Sounds like your injury and probably some ill advised observations from your PT have sent you spinning. Take a break from analyzing your health, and come back and say hi next year at this time. No don't ask for a bulbar EMG!
Laurel
I have read everything that you have written. Please listen to Allen (TRfogey) he has tremendous knowledge and would not lead you astray. You are starting to somatize everything now. Sounds like your injury and probably some ill advised observations from your PT have sent you spinning. Take a break from analyzing your health, and come back and say hi next year at this time. No don't ask for a bulbar EMG!
Laurel
Toto's Dorothy
Very helpful member
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- 11/2008
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Marta,
How do we know it's her money? Could be on the taxpayers.
Allen,
Don't waste your time. I know how hard it is to "type". It's just not worth it.
Laurel,
She won't listen! Bet your hubby would switch with her. I surely would rather deal with Munchausen's than ALS anyday.
And Vexatia,
Really sit back with an open mind and reread and reread every post. Then maybe just then you will realize how you sound. I will pray for your healing.
How do we know it's her money? Could be on the taxpayers.
Allen,
Don't waste your time. I know how hard it is to "type". It's just not worth it.
Laurel,
She won't listen! Bet your hubby would switch with her. I surely would rather deal with Munchausen's than ALS anyday.
And Vexatia,
Really sit back with an open mind and reread and reread every post. Then maybe just then you will realize how you sound. I will pray for your healing.
Hi Laurel-
Thanks much for your suggestion. You may be right re: somatization, though I'd note that I had started believing (thanks, in part, to this forum) that I didn't have ALS (so much so that I even considered cancelling the ENT visit, but figured that they would find some acid reflux and send me on my way) until my appointment yesterday. I did not anticipate the discovery of additional anomalies -- which has re-raised my concerns. As I read about MTD (Muscle Tension Dystonia) and vocal flap hypomobility, I find it difficult to ignore the possible connections to neurological causes (albeit only in a minority of cases). I'm asking those with experience dealing or living with vocal disorders, whether secondary to ALS or otherwise, for their thoughts on this.
Thanks much for your suggestion. You may be right re: somatization, though I'd note that I had started believing (thanks, in part, to this forum) that I didn't have ALS (so much so that I even considered cancelling the ENT visit, but figured that they would find some acid reflux and send me on my way) until my appointment yesterday. I did not anticipate the discovery of additional anomalies -- which has re-raised my concerns. As I read about MTD (Muscle Tension Dystonia) and vocal flap hypomobility, I find it difficult to ignore the possible connections to neurological causes (albeit only in a minority of cases). I'm asking those with experience dealing or living with vocal disorders, whether secondary to ALS or otherwise, for their thoughts on this.
kmendsley
Distinguished member
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- Feb 19, 2010
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Vex, I am pretty sure everyone who wanted to , and did respond has done so. Like others said before me, re-read all of the posts and reflect on them. Even though some of us may not be living with vocal disorders, we still do know about the disease and how it progresses...especially trfogey. Take this to heart, and relax. The answer to your problems will come soon enough, and as it says all through this post...we do not believe that ALS is your problem.
Good luck to you.
Good luck to you.
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