StillSteve
Active member
- Joined
- Apr 28, 2010
- Messages
- 41
- Reason
- PALS
- Diagnosis
- 02/2011
- Country
- US
- State
- MN
- City
- Twin Cities
I've not posted in about two months because little has changed in my case. No news is good news, and I'm thankful for that. But I'm trying to prepare for what I can, and have some questions related to VA benefits for ex-US servicemen.
First, some background info that is relevant to my questions:
***
My neurologist (an ALS specialist)--based on the results of three EMGs, an MRI, blood and urine tests and re-tests--"suspects and expects ALS." But I have no diagnosis, because at this point the EMGs have shown clear evidence only in my left arm. There have been two "minor" findings in the first dorsal interosseus muscle of my right hand (the first symptoms I noticed around a year-and-a-half ago were in this same spot on my left hand). The only UMN signs he detects are brisk reflexes in my left wrist. I have normal reflexes in my left ankle and knee, and the doctor suspects that these indicate that I am "developing brisk reflexes" in these locations since I have NO deep tendon reflexes on my right limbs, and was diagnosed in 2007 with Adie's Syndrome. At that time, my examining neuro-opthamologist wrote that he was "unable to elicit deep-tendon reflexes in any of the seven locations tested" (this is a feature of Adie's). My current neuro has written that he's observed "no bulbar involvement" and that Babinski's and Hoffman's signs are absent.
My doctor and the staff at the ALS clinic have told me that my progression is slow. The little change that has occurred is in my left arm and hand. I show significant atrophy in both, and this is becoming more pronounced and I'm getting weaker. To some degree or another, I'm having all of the expected problems with my left hand: can't turn a key, very little grip strength, hard to manipulate buttons, typing with difficulty, etc.
Fasciculations, which I didn't notice until the end of February this year (about eight months ago) seem to be getting worse. I get them virtually everywhere from neck down (I get some facial tics that I think are probably unrelated). They seem to be getting stronger, too. Strong enough to move my fingers, can be seen "jumping" even through shirt sometimes on chest and shoulders. Fasics were detected in arms and legs during last EMG and, doctor has seen them. He mentioned that he wouldn't expect these in monomelic amyotrophy (MMA), which he mentioned earlier as a possible diff/diagnosed.
I'm 50 years old, still working, and in otherwise good health. I served four years in the U.S. Navy (1980-84) and was honorably discharged. I did not serve in combat (and I can't imagine that my ALS really has anything to do with my service). I've never received any VA health benefits or visited a VA hospital (never knew I might be eligible).
***
I have lots of questions about the process of applying for VA benefits. I know that ultimately some VA office or "hotline" will be the place to go for information. But maybe there are some PALS or CALS here who can point me in the right directions. Here are my questions today:
- Given my current condition (undiagnosed, but well-qualified doctor seems pretty confident that ALS will ultimately be the answer), is there any reason to contact the VA now?
- I've already had a second opinion, though it wasn't a completely independent one (my first neuro referred me to the U of Minnesota ALS clinic, and passed along results of first two EMGs along with her opinion). Is it possible/advisable to go to a VA hospital for a third (second?) opinion at this juncture?
- I may have a chance during an open enrollment period next month to buy long-term disability insurance. (It's not clear to me yet whether ALS would be excluded for just one year, or forever based on the fact that I have seen a doctor in the past year for this yet undiagnosed condition.) If buying LTD insurance this is an (expensive) option, is it unnecessary given my status as a U.S. military veteran? In other words, what sort of benefits does the VA provide to PALS?
I understand that the best answer to all three questions might be "Call the VA and ask them," but I appreciate any pointers that anyone here can provide.
Thanks,
B
First, some background info that is relevant to my questions:
***
My neurologist (an ALS specialist)--based on the results of three EMGs, an MRI, blood and urine tests and re-tests--"suspects and expects ALS." But I have no diagnosis, because at this point the EMGs have shown clear evidence only in my left arm. There have been two "minor" findings in the first dorsal interosseus muscle of my right hand (the first symptoms I noticed around a year-and-a-half ago were in this same spot on my left hand). The only UMN signs he detects are brisk reflexes in my left wrist. I have normal reflexes in my left ankle and knee, and the doctor suspects that these indicate that I am "developing brisk reflexes" in these locations since I have NO deep tendon reflexes on my right limbs, and was diagnosed in 2007 with Adie's Syndrome. At that time, my examining neuro-opthamologist wrote that he was "unable to elicit deep-tendon reflexes in any of the seven locations tested" (this is a feature of Adie's). My current neuro has written that he's observed "no bulbar involvement" and that Babinski's and Hoffman's signs are absent.
My doctor and the staff at the ALS clinic have told me that my progression is slow. The little change that has occurred is in my left arm and hand. I show significant atrophy in both, and this is becoming more pronounced and I'm getting weaker. To some degree or another, I'm having all of the expected problems with my left hand: can't turn a key, very little grip strength, hard to manipulate buttons, typing with difficulty, etc.
Fasciculations, which I didn't notice until the end of February this year (about eight months ago) seem to be getting worse. I get them virtually everywhere from neck down (I get some facial tics that I think are probably unrelated). They seem to be getting stronger, too. Strong enough to move my fingers, can be seen "jumping" even through shirt sometimes on chest and shoulders. Fasics were detected in arms and legs during last EMG and, doctor has seen them. He mentioned that he wouldn't expect these in monomelic amyotrophy (MMA), which he mentioned earlier as a possible diff/diagnosed.
I'm 50 years old, still working, and in otherwise good health. I served four years in the U.S. Navy (1980-84) and was honorably discharged. I did not serve in combat (and I can't imagine that my ALS really has anything to do with my service). I've never received any VA health benefits or visited a VA hospital (never knew I might be eligible).
***
I have lots of questions about the process of applying for VA benefits. I know that ultimately some VA office or "hotline" will be the place to go for information. But maybe there are some PALS or CALS here who can point me in the right directions. Here are my questions today:
- Given my current condition (undiagnosed, but well-qualified doctor seems pretty confident that ALS will ultimately be the answer), is there any reason to contact the VA now?
- I've already had a second opinion, though it wasn't a completely independent one (my first neuro referred me to the U of Minnesota ALS clinic, and passed along results of first two EMGs along with her opinion). Is it possible/advisable to go to a VA hospital for a third (second?) opinion at this juncture?
- I may have a chance during an open enrollment period next month to buy long-term disability insurance. (It's not clear to me yet whether ALS would be excluded for just one year, or forever based on the fact that I have seen a doctor in the past year for this yet undiagnosed condition.) If buying LTD insurance this is an (expensive) option, is it unnecessary given my status as a U.S. military veteran? In other words, what sort of benefits does the VA provide to PALS?
I understand that the best answer to all three questions might be "Call the VA and ask them," but I appreciate any pointers that anyone here can provide.
Thanks,
B