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  • Oh man, sorry Greg! Billybob contacted me to ask questions and I thought I was on his page. SORRY. Any way, I can't help but laugh sometimes when I read your posts in the "Do I have als section." I love your attitude...
    My bro was dealing w/ VA for a couple of years due to symtoms-no answers. They referred him to neurologist who sent him to Duke for an EMG on 8/25. His neurologist performed MRI on 9/18, w/in days confirmed ALS dx. Rep @ PVA did an intent to file on 9/25. Mike dropped off VA als questionnaire provided by PVA for doc to complete. PVA forwarded it w/ claim. Got dd214 expedited. My brother called rep Tues morning and was told no dd214- no decision, however,rep called back that afternoon to say dd214 on file-approved. Told to expect his chk by end of Nov and would be notified when C&E comp appt was scheduled to determine eligibility for SP. You should have heard something by now. Call your rep asap! You can check claim status on ebenefits site. If you need help registering holla at me. If your rep is dilly dallying, def call PVA for help. Bruce, aka DA Chief said all you need is a simple letter stating ALS. Plz keep me updated and let me know if I can help. Btw, I'm Tina nice to meet you.
    Thanks, Tlo57. I started the VA venture with a local Veterans Service Consultant @ the Sumter County FL Veterans Service Office. She took my neurologist's diagnosis letter, my marriage certificate and DD214 and created a case file and submitted all of this to the VA on September 15 for consideration. The VA confirmed receipt of my case on Sept. 21. I am currently on 50mg/2xday of Riluzole. I'm obviously hoping this is all I need to get approved and that I don't have to undergo any further blood tests, MRIs and EMGs. Did your brother get approved for benefits? If so, how long did it take? Do you think it might be best to contact the PVA to take over the case to get it expedited?
    Billybob - go to military and veterans forum for thread entitled important: guide to veterans benefits prepared by Mr Astugi.
    Hi billybob!
    My brother was initially seen @ the Johnson City VA who referred him I believe to Dr Radoff, a neurologist in Knoxville who then sent him to Duke for an EMG. Dr Radoff had him undergo a full MRI for a 2nd opinion. My brother Mike contacted a Rep at PVA who did an intent to file while waiting for VA questionnaire to be filled out by Dr Radoff. We needed his dd214, so I asked that it be expedited. His Rep submitted it and he was approved almost immediately for 100% service connected compensation. The VA is going to set up an appt w/ a VA doctor to determine what if any Special Compensation will be awarded. If you post a new thread in the military/ VA forum, there are quite a few vets who can guide you through the process. In fact, Mr Atsugi( Mike) is a retired Air Force vet who also worked at the VA has a link to download documents that were dummied down for ppl like me. Let me get back to you on which section they can be found. I'm sorry that you have to be here.
    Hi! I was just diagnosed on Sept 1, 2017 as well. I have sought the services of a VA advocate and filled my claim. The claim was filed along with a diagnosis letter from the neurologist @ UF Health/Shands. Can you tell me what all you had to submit for your brother's claim? Did he have to undergo an exam and EMG @ the VA? Thanks!
    Let's put this Q and my A on the board for all to see. In the Veterans section.
    Sure, but I don't think that does anything in this Forum.

    Be aware that this is being typed with eye-gaze and it's a bit of work, so if you're looking for feedback / conversation, you're better off posting!

    Hopefully you find this, if not I will contact you another way. Did not want to high jack your thread. I started the VA process in Knoxville the first of this year before moving back to FL. I have to say the Knoxville Clinic doesn't have a clue about ALS, HOWEVER, the VA Hospital in Johnson City was fabulous. It's a couple of hours drive though.

    Tlo, you've enter this question in your Profile area, where almost no one looks.

    If you've a question, please post a thread in the Do I Have ALS forum!

    ALSforums Mod
    I just registered to be a member on this site. After researching several forums, I found this site to be very genuine. My twin brother, 57 years old, was diagnosed with ALS at Duke University last month. The specialist did so w/ >90% certainty. He started w/ the drop foot a couple of years ago, so they made special braces for him not knowing what the problem was. He said his thigh is now numb which resulted in a fall last week. His throats has been cramping so he has had the swallow test too. He's feels severely fatigued. He went for a 2nd opinion in Knoxville w/ a Neurologist who said they can't agree or disagree until after he has another complete MRI on the 18th. I've been on the internet trying to understand all of this. We have no ALS in our family. I'm extremely upset and find it difficult to comprehend all of this. It's just too painful. I hope I haven't rambled, so if anyone can help me understand this I would really appreciate it.
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