TheBean
New member
- Joined
- Jun 10, 2015
- Messages
- 9
- Reason
- PALS
- Diagnosis
- 05/2015
- Country
- US
- State
- CA
- City
- Sunnyvale
Hello,
I have been having symptoms for about 2 years and began putting it all together about 1 year ago. Then denial hit and even though I had a referral to neurology for now constant slurred and worsening speech, I put it off until May of this year. I just last week received an ALS diagnosis which my doctor would like verified by a colleague in a fairly nearby university medical center.
My questions are:
How many tests are enough? I read so many places that so many tests are required. I have had numerous blood tests (with a $5,000 blood test waiting for insurance approval to rule out Gillian Barre), NCS and EMG (both abnormal), repeat of a couple of the blood tests with recent notification that all blood and urine came back negative. I see pulmonary tomorrow to make sure "I can still get deep breaths." And aside from a thorough neuro exam on my first visit and rechecks since, that I all my doctor has asked me to do.
I had slurred speech as my first symptom, followed by tongue atrophy and a lot of trouble moving food around my mouth, followed by massive facsiculations in my thighs, some in my calves which have all but disappeared; some in my face and mouth and a 24/7 tongue twitch that I did not even know I had. Within the last two months I developed weakness in my lower legs and feet and feel very aware of walking where I never did before. I have tripped and fallen numerous times in my home over the past year; but just once outside about two weeks ago. I have a bit of trouble swallowing certain foods--but nothing serious.
Are the tests my doctor ordered and performed all that is necessary? He did say that my symptoms are progressing rather quickly and he is also concerned about that. I didn't dare ask my estimated life expectancy because I don't think I want to know. I could have lived not knowing I have ALS---but now that I do, I am also dealing with a husband who's reaction was
"we may as well sell our home right now because there is no way we can pay for your upcoming medical expenses." That and he doesn't know how he is going to handle it. How HE is going to handle it. Never a question about how I am doing or how I am dealing with my biggest fear: my kids losing their mom. That made me feel like an instant burden. Along with his first reaction he told me that he doesn't know if he should believe me or not and wants to know what it all means for him.
So sorry to long winded--questions again: Not that I want ANY more tests, but were the ones he did adequate (he thinks so); and, does exercise and/or stregthening remaining intact muscles of the legs help? I have been referred to PT. Also, any input about how to handle disgruntled spouses and family members who feel that I, personally, have placed a burden on them would be most helpful.
Thank you for your time and for listening.
I have been having symptoms for about 2 years and began putting it all together about 1 year ago. Then denial hit and even though I had a referral to neurology for now constant slurred and worsening speech, I put it off until May of this year. I just last week received an ALS diagnosis which my doctor would like verified by a colleague in a fairly nearby university medical center.
My questions are:
How many tests are enough? I read so many places that so many tests are required. I have had numerous blood tests (with a $5,000 blood test waiting for insurance approval to rule out Gillian Barre), NCS and EMG (both abnormal), repeat of a couple of the blood tests with recent notification that all blood and urine came back negative. I see pulmonary tomorrow to make sure "I can still get deep breaths." And aside from a thorough neuro exam on my first visit and rechecks since, that I all my doctor has asked me to do.
I had slurred speech as my first symptom, followed by tongue atrophy and a lot of trouble moving food around my mouth, followed by massive facsiculations in my thighs, some in my calves which have all but disappeared; some in my face and mouth and a 24/7 tongue twitch that I did not even know I had. Within the last two months I developed weakness in my lower legs and feet and feel very aware of walking where I never did before. I have tripped and fallen numerous times in my home over the past year; but just once outside about two weeks ago. I have a bit of trouble swallowing certain foods--but nothing serious.
Are the tests my doctor ordered and performed all that is necessary? He did say that my symptoms are progressing rather quickly and he is also concerned about that. I didn't dare ask my estimated life expectancy because I don't think I want to know. I could have lived not knowing I have ALS---but now that I do, I am also dealing with a husband who's reaction was
"we may as well sell our home right now because there is no way we can pay for your upcoming medical expenses." That and he doesn't know how he is going to handle it. How HE is going to handle it. Never a question about how I am doing or how I am dealing with my biggest fear: my kids losing their mom. That made me feel like an instant burden. Along with his first reaction he told me that he doesn't know if he should believe me or not and wants to know what it all means for him.
So sorry to long winded--questions again: Not that I want ANY more tests, but were the ones he did adequate (he thinks so); and, does exercise and/or stregthening remaining intact muscles of the legs help? I have been referred to PT. Also, any input about how to handle disgruntled spouses and family members who feel that I, personally, have placed a burden on them would be most helpful.
Thank you for your time and for listening.