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Tony292

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Boise
I am an active duty army officer with over 15 years in and today I was diagnosed with MND. My Neuro has been testing me for over a year 3ea EMG, brain and spinal MRI, spinal tap, DATSCAN, etc. he has ruled out pretty much everything but ALS. I have both UMN and LMN signs to include: hyperrefelxia and babinski positive on both legs and feet, atrophy of legs and left hand, fasics, and a very abnormal latest EMG (3rd in a year). First two EMG were 2 months apart at the onset of symptoms and both fell into the normal range.

Symptoms started with numbness in hands and feet, tripping over and dropping things, left foot drop, left hand grip and pinch strength loss, loss of balance, fasics, and extreme fatigue. As a Soldier, I tried hard to hide things at first, but it quickly became apparent that I could. Not. I am 40 and it took around 18 months to diagnose, so I still have hope that I will have a slow progression and that treatment will be found soon, stem cell or otherwise. I have great difficulty walking and fall down a lot, but I am getting a right knee brace to stop the knee buckling and a left foot brace to combat the left foot drop and a cane in the next few weeks.

My Neuro stated he firmly believes that I am in the initial stage of ALS but that he needs 3-6 months and another EMG before he will confirm the ALS diagnosis, so for now he diagnosed me with MND. He stated he is very sure it isn't one of the other MND subtypes.

So I have read up on the army disability evaluation system and VA and SSDI and am comfortable that I will be ok financially and with healthcare. I have a lot of reading to do on the disease and how to eat, exercise, rest etc to help myself as much much as possible.

It will take me 1.5 years to go through the military disability process, I will continue to get paid and get a medical retirement, so that is a blessing. In a world of uncertainty, I am truly appreciative of and count my blessings. I cannot imagine going through this disease with little or no job security healthcare support, etc.
 
I am sorry for your diagnosis. I come from a military family and married military man. Thank you for your service. The people here are wonderful, just ask a question and someone will chime in and have an answer.

There is a wealth of information here.
 
Welcome, Tony.
You will find the people, and the posts here very helpful as I have.
I was diagnosed when I was 40, I'll be 43 in a few months.
What has helped me through it all, is the friends i've made here, and keeping a positive attitude.
Cheers,
Casey
 
Hi Tony,!
I too thank you for your service! I don't know how you and all the folks do it. It is the ultimate definition of sacrifice ! I just read your post , realize what good therapy it is to hear others with the same struggles. I just posted a little while ago , I guess I was really just ranting and venting because I'm getting very impatient . My whole situation is just 6 months in. I forget about my blessings sometimes, although that should never happen. Good luck with your journey!
Mathew
 
P.S.
I also love Casey's line about things getting heavier !
HA HA !
 
My husband was diagnosed July/12, was walking but tripping, and now is a partial quadriplegic. I second that having VA benefits are a blessing, as I don't know what we would do if he didn't have them. I would suggest that you have a sleep study fairly soon, as so many ALS patients have or had sleep apnea before they were diagnosed. If you have it you will drop your oxygen level in the night, and that is never good especially someone with ALS. They set my husband up with a ResMed VPAP, and now an IVAP and trilogy 100 ventilator. He does not have a tracheostomy, and is only interested in non-invasive ventilation. I am not saying that you will progress as quickly as he has, but it does take some time for assessment through the VA, and it is sometimes difficult to stay ahead of this disease.
We did not get it from the VA, but you may be able to depending on your OT, and the prosthetics department, but would recommend a bidet toilet seat, on a raised toilet. You will qualify for the HISA grant for renovations to make your house more wheelchair accessible, and or adapted to your needs. You need to submit the project plans, and pictures before you start, for approval.
 
Get registered with VA immediately after release from service, initiate forms for disability but recommend you process all paper work through PVA Service Office. I am RET-ARMY 5/1973 2 tours in RVN, thanks Agent Orange.
 
Get registered with VA immediately after release from service, initiate forms for disability but recommend you process all paper work through PVA Service Office. I am RET-ARMY 5/1973 2 tours in RVN, thanks Agent Orange.

I second that, but would add that getting to a proper ALS clinic like Dr. Appel's in Houston will short circuit a lot of BS. I am a vet also, and the VA support is *very* important! Like pearshoot, I was Vietnam 70-74.

Regards,

Max
 
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