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Shadowmind

New member
Joined
Jul 17, 2015
Messages
2
Reason
Learn about ALS
Diagnosis
07/2015
Country
US
State
WA
City
Seattle
Good morning all,

My name is Eric and I am Veteran who served in Northern Iraq during the first Gulf War. Leaving Iraq I came down with a serious case of motor neuron disease. For the past 25 years I've had almost complete peripheral neuropathy, fasciculations, eye twitches in the right eye, massive joint pain, irritable bowel syndrome, rashes, skin ulcers, and asthma & arrhythmia with exertion (to the point of feeling like I'm having a heart attack). Plus the chronic fatigue that goes with it all, which is always at odds with the excessive amount of anxiety that I have. I.E. the feeling like I'm jumping out of my skin needing to do something, but having zero energy to do it.

In 2012 I fell on a patch of ice in Alaska and did a whole lot of damage to my skeletal-muscular system. I wound up with a spiral fracture to the right leg, which now has a titanium rod, broken right hip, L2, L3, L4 pancaked, with the disks between those three ejecting. My right femur is 1/2 inch shorter than my left now. This has also aggravated a right knee injury that is 20 years old as well.

I've had a terrible time recovering from the accident. After 3 years of non-stop PT, my muscles are wasting, my fasciculations have sped up. Every joint around the damaged areas feels like a knife has been thrust in it. I have permanent spasticity in my lumbar, thoracic, shoulders, and neck muscles. They simply will not release, regardless of how many muscle relaxers I take, massage sessions, or chiropractic adjustments.

Thinking this was all stemming from the accident in 2012, I was working with regular MD's, trying to figure out why I've started presenting symptoms that are similar to spinal stenosis. 2 primary care MDs, 2 orthopedic surgeons, 3 physiatrists, all thought I was psychosomatic. My lumbar MRI came back without narrowing and clean signal. Same with my cervical and thoracic MRIs. It wasn't until a neurologist looked at my EMG and noted the "odd" peripheral neuropathy, that they decided to start ruling out MS, ME, and ALS. After a ton of MRIs and blood tests, no MS lesions, no Lyme disease, no Hep-C, not a protein deficiency, not a B vitamin toxicity, leaving very few options left. In the end he determined that I have a "Unknown MND", most likely Sarin gas toxicity from the Gulf War. My neurologist suggested that I contact the VA again, that this all seemed really "odd" (his words). He was quick to NOT declare that I have ALS because my hand strength was still "OK". Not great, but not bad enough to declare me with ALS. Although I present with classic ALS symptoms.

For the past 2 months, my symptoms have gone on a fast track to hell, landing me into the VA hospital system again. My right hip joint is unbearable. I feel like I am going to fall over when I climb stairs. The fasciculations aren't novel anymore, they're like rippling waves in a storm at sea that won't stop. I've developed a tick when trying to go to sleep, big spasms in the larger muscle bodies. My legs feel like I have huge sacks of concrete tied to them when I walk. My hips sway when I walk. The numbness has left me feeling like a walking zombie. I'm in a foggy haze all day & I can't concentrate at work anymore. My vision has gone foggy and doubled. My lungs feel like their caving in and my asthma is in over drive.

The VA doctors that I saw also said that I have an acute case of PTSD stemming back to the Gulf that needs to be dealt with. Their take on all this is that I haven't been able to get quality rest at night because of sleep disturbances. Plus the sudden crash from the traumatic fall in 2012 put my already damage neurological system into shock and it's shorting out.

While all of that does in fact make so much sense to me, I also know a lot of the veterans who were diagnosed with Gulf War Illness have developed full blown ALS. Of course I'm scared & my anxiety is off the charts these days. If my symptoms have picked up pace, and so far none of the Drs that I've spoken to are willing to make the call yet, what do I do? Continue to wait for one of my appointments in August and just keeping hounding them? I've started a neuro log to help me track my symptoms and how bad I feel on a daily basis. Do ALS patients really need to get to the point where they can't care for themselves any longer before they can get diagnosed?
 
Hi Eric, welcome. Many veterans here, including me. My wife, also a veteran, died of ALS.

Sorry to see you've got a lot of FUBAR symptoms. Don't know what it could be.

Some people with ALS are diagnosed slowly over time and some get diagnosed quickly. I think it depends a lot on the patient and how much access they have to doctors. My wife was diagnosed within weeks of her first symptom, which is very quick.

You said you presented with classic ALS symptoms, but I don't see that. What symptoms would you say are ALS-like?

--Mike
 
Slurring speech, atrophy, weight loss, stumbling, dropping things, respiratory issues with exertion, forgetting how to swallow, hyper-reflexes, dead nerve endings.

The weakness (not being able to climb stairs) has rapidly progressed in the last couple months. I've been going through bouts of having swallowing issues as well. It'll feel like I have something 'stuck' in my throat just above my sternum, and I have to force my brain to remember how to swallow. At least that's the feeling I get. Testing my reflexes is painful and reactive. Just like the pain in all my joints is hyper-reactive.

Not so fun when you teen daughter makes fun of you when you slur/jumble your sentences as well. That has gotten much worse over the last couple months as well.

Hand grip is still good enough to hold a glass, but I often need to keep my pinky under the glass so it doesn't accidentally slide out. I've described this sensation to the Dr as "Not so much a loss of strength, but more a feeling like the glass is not there, I can't feel it in my hand and I forget to keep a grip on it, then it falls to the floor."
 
Okay, Eric. Let's go through a few things. I'm not sure you have the fatal disease of ALS. An EMG needs to be done by a neurologist who specializes in Motor Neuron Diseases. There are other things this could be.

Let me comment on slurring speech first. The reason some People with ALS (PALS) slur their speech is because the tongue is lying limp in their mouth. Swallowing is a problem because the tongue doesn't cooperate, so we have difficulties swallowing liquids first. Later, there are difficulties swallowing food. Any doctor can investigate the tongue, and VA can easily do a swallow study.

ALS itself doesn't cause pain. In ALS, the motor neurons in the brain AND brain stem are damaged, so that the signal to contract doesn't get out to the muscle. So the muscle simply doesn't contract. There's no pain, no feeling of exertion or tiredness, nothing. The muscle simply doesn't go.

Lots of conditions cause these problems. To be considered ALS, two things have to happen: One, the doctor has to rule out all other more likely causes, and two, the MND-trained neurologist has to find a particular set of problems on an EMG exam which involve both Lower Motor Neurons and Upper Motor Neurons.

It's important to ensure the diagnosis is correct because ALS is fatal. So you'll need a second opinion from another neurologist who deals with ALS every day. You're in a good place, Seattle, to find good specialists. If I were you, I'd go outside the VA to get the second opinion. The VA chief of neurology will need to make a request to the Fee Basis/Managed Care office to get Fee to authorize the non-VA care in advance. It helps to let your neurologist know exactly which non-VA specialist you want to see, so that Fee can put his name on the authorization.

But ALS is rare, and you've described a lot of sensory problems. ALS doesn't affect the sensory nervous system. That's why I think you're dealing with something non-fatal, not ALS.
 
Eric, I have one other thing to say pretty quick. If I thought I had a terminal disease, I'd buy a whole lot of life insurance before getting the diagnosis. We did that for my wife, and that made a huge difference to the surviving family. --Mike

PS: On the bright side. ALS is a "presumptive" disability. So you get rated 100% P&T immediately with increasing SMC's as the disease progresses. The money and the care are very good. There are many VA benefits listed on the sticky thread at the top of our General Discussion forum. VA takes very good care of PALS and their survivors.
 
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Mike, my husband's bulbar ALS started with difficulty swallowing food- not liquids. That's why we saw ENT doctors for almost 2 years before being referred to a neurologist. Everyone presents a little differently, as we surely have learned on this forum.
Eric, you have dealt with so much. As Mike has said, this could be so many other things. We will keep you in our prayers that it is something else.
IF it does turnout to be ALS (UNlIKELY!) no one takes better care of you than the VA. Everything my hubby needed was paid for by them- and I will be forever grateful to them that he never needed to worry about being able to get what he needed, and to know that I would receive a stipend as well.
Thank you for your service. So sorry you are having so many residual problems from those years.
 
"Almost complete peripheral neuropathy?"

Eric, I've no doubt that you've been through a lot and there could well be some medical interventions that could help, but I wouldn't make an ALS clinic my next stop in your shoes. I would try to stabilize the symptoms and separate out what may be psychological from what is not, to further the diagnostic process and not have it drag on any longer than it already has, while you are obviously suffering.

In Seattle, there is a place called the Rehabilitation Institute of Washington in Queen Anne. Among their therapists is one who used to work in ALS at VMMC. I don't have any personal experience with them, but I think a program like that might help you, if you can get there for an eval. At least, I think they could point you toward the right level of care.

Best,
Laurie
 
Eric,
I'm an old Sailor with four deployments to the gulf and many extra trips to Bahrain, UAE and Kuwait. I think it its just being in the military that puts you at higher risk

Mike
 
Your average GI has a higher chance of getting ALS: 40% higher than the average civilian.
A 1991 Gulf War veteran has an even higher change of getting ALS: double that of the average veteran.
Any veteran with ALS who served 90 days or more of active duty becomes rated as Permanently and Totally disabled, 100% Service Connected.
 
Eric,
First, thank you for your service. My pals is a vet also. You have been thru a lot! I'm assuming you know you can qualify for Presumptive disability benefits for undiagnosed illnesses from your service in the Golf War:

Undiagnosed Illness. There are several sets of symptoms without medical explanations that the VA recognizes as being entitled to presumptive service connection. These symptoms are so common to Gulf War veterans that they are commonly referred to as Gulf War Syndrome.
Symptoms of qualifying undiagnosed illnesses include:
cardiovascular signs or symptoms
joint pain, muscle pain, headache
neurological symptoms
neuropsychological conditions
skin problems
respiratory system problems
menstrual disorders
fatigue and/or sleep disturbances
abnormal weight loss, and
gastrointestinal symptoms
These symptoms must be chronic, meaning they have lasted for six months or more or have periodically gotten better or worse during a six-month period.
Your physician must identify these symptoms as undiagnosed. If your physician gives you a specific diagnosis for your symptoms, you are not entitled to presumptive service connection, and you will have to prove direct service connection to obtain benefits.

Let's hope there is no ALS involved, but you're still going thru Heel anyway.

Sherry
 
I agree with the above commenters and will only add this:

Distinguishing between an axonal peripheral neuropathy where the axon is the problem and ALS where the anterior horn cell is the problem is extremely difficult.

The peripheral nerve and the paraspinal nerve split at the dorsal root ganglion after leaving the spinal cord. If your EMG only shows denervation in the peripheral nerves, then it is likely a peripheral neuropathy. If the EMG shows denervation in the thoracic paraspinal nerves, then it is more likely indicative of an anterior horn cell disease (ALS). Therefore, the best way to determine peripheral neuropathy or ALS is to do an EMG and "run" the thoracic paraspinals.

Thoracic radiculopathies are very rare, whereas radics are common in the lumbar and cervical regions, which is why the EMG should focus on the thoracic paraspinals.

August is not very far away, so talk to your neuro about this. It may be a way to take ALS off the table. Good luck...
 
Dusty, how'd you get so smart?
 
An example I used with my grandson...

It's like a stereo with 2 speakers and an amplifier.
If one speaker (call it the peripheral) doesn't work, you suspect it's in the connection or the wire (the axon).
If both speakers (the peripheral and the paraspinal) don't work, you suspect it's in the amplifier (the neuron).

Some amplifiers (spinal nerves) are more beat up (lumbar and cervical) because of what we humans do to our necks and low back. Other amplifiers (like spinal nerves in the thoracic region) are less subject to wear and tear, so you get a more accurate result by looking at them. If you test an amplifier that should be good (thoracic region) and find that both speakers don't work (denervation in paraspinal nerves and peripheral nerves), then you can suspect the problem is in the amplifier which = neuron =ALS. If the problem is only in the peripheral nerves, and not the paraspinal nerves, then you likely have a peripheral neuropathy and ALS is very unlikely.
 
Have you requested a referral to the War Related Illness and Injury Center? There are three of them in the VA and they are specialty centers for people like us dealing with unusual symptoms that are difficult to diagnose. I am going to the one at the Palo Alto Va in August. Your primary care doc has to refer you and most have no idea how to do it. If you google it you can find specific directions to give your PCP and they can use the regular referral process from their VA computer to initiate the referral. DO NOT let them chalk it all up to PTSD! They also have one in New Jersy and one in Wasnhington, DC (I think). It is a week long process of testing!
 
Eric, it also sounds like you are dealing with an autonomic disorder (which many of from the Gulf are dealing with and the VA will not acknowledge). I had to find a great outside doc who finally pinned it down along with mitochondrial disease (due to exposures as well- that is my story).

My VA docs tried to say it was all in my head too until the muscle biopsy showed mitochondrial disease. So, finding a really great outside neurologists is tricky but going to the War Related Illness and Injury Center might be a first step and then asking to go to Mayo which is what I am doing.
 
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