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?
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?