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Tony292

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First of all I admire all of you that actually do have an ALS diagnosis. My hat is off to you. It must take true courage to face the challenges you do every day.


I am a career Army Soldier. I have 15 years of service and only 5 more to retire. I truly can't wait. Anyway, I did my frst 14 years of service with only an annual medical exam once a year for 14 years. Not a hypochondriac Shopping for a disease by any stretch of the imagination. My 15th year I started having insomnia... It got bad quick ending up with 2.5-3 hours of sleep per night. Just before I went to the doc and asked for sleep meds I noticed a lot of twitching under my left eye and a tic/twitch in the corners of my mouth when I smiled.

I was prescribed ambien for imsomnia in May of 2012 and the crazy Neuro symptoms cascaded soon thereafter... Loss of balance and coordination (Neuro said proprioception) stumbling like a drunk, fasciculations all over my body, pins and needles in hands and feet. Fast forward to the fall of 2012 and I had switched to Lunesta but symptoms remained and I had brain and spinal MRIs, spinal tap, EMG, Nerve conduction study, EEG, and numerous blood labs to test for MS, MG, Parkinson's, etc. EMG in june of 2012 had some "discrepancies" but was within normal limits... Whatever that means! Neuromuscular doc also did red lens test and diagnosed diplopia at the time.


In 2013" I have had 3 optometry prescriptions for ever changing blurry/double vision. Optometrist told me to stop coming back and that I needed a Neuro opthomologist referral although he declined to give me the referral (damn docs). Also had 2 referrals to a movement disorder specialist to test for Parkinson's ( had developed a slight tremor) and had a DAtSCAN come back negative for Parkinson's.

Anyway, recently I have had shortness of breath (dsypnea) and been in the ER twice and weakness in both legs to the point I have had to crawl up the stairs at night. Exercise or lack of sleep makes everything worse. The progression seems slow and looks like myasthenia gravis (minus ocular symptoms aside from diplopia) but I also have lower and upper motor neuron symptoms such as positive Babinski sign and fasciculations.

Again I am a Soldier and very used to high levels of physical demands and adversity, but when I cannot breathe and cannot climb the stairs, I need to stop sucking it up and see a doc and seek help, this is out of my range of normal and no amount of painkillers or self medicating is going to help, that much is obvious. My troops have also noticed my left foot dragging and other symptoms i cant hide anymore and it is just a matter of time before I am medically discharged or retired.

I am tired of all the neuros 2 plus neuromuscular dr plus MDS all telling me it is psychogenic.. That is Fing BS! I have deployed and faced a lot of tough and demanding situations both mentally and physically in my 15 years of service. I want to chew up and spit out these damn doctors but unfortunate they all have the upper hand... And my damn legs and boys simply won't cooperate anymore. Any advice is welcome. I don't want ALS or any other disease for that matter, but whatever it is I want to know so I can prepare to deal with it.
 
Sorry forgot some things. Difficulty swallowing, loss of 10 pounds in the past month, extreme loss of libido to the point of being completely unable to orgasm, difficulty speaking at times unless very rested.
 
I can understand your frustration. I have dealt with military medical for years. I was referred out to the civilian drs. I am a dependent wife. Have you tried to be referred to the civilian medical ? If not maybe a larger military facility. Maybe patient rep and complain.
 
If anything, for me this sounds like possible MS or Lyme. Diplopia is sometimes a starting symptom in MS. A lot of your symptoms correlates with MS, which does not always show on blood tests, neither does Lyme.

Have you done a lumbar puncture? That would give more accuracy in a possible MS or Lyme diagnoses.

I find it very strange that with a clinical exam that showes positive Babinsky, you would be deemed as someone with psychogenic issues. See a specialist.

However, ALS would have showed up on your EMG, especially with the symptoms you are describing. Neither are you mentioning atrophy or degeneration, which would be present after having fasics for a year, if it was ALS.

I hope you reach an answer about your issues.
 
I have tested negative for both MS and Lyme. Have had a lumbar puncture.. Negative MS O bands... not fun. I Have also been to the university of cincinnatti movement disorder clinic. Doctors seem to only have 20-30 minutes per patient and if you don't fit a neat cookie cutter set of symptoms, they want to dismiss you because they have the next patient waiting in the lobby. I go back for a SFEMG on December 10th hoping and praying to find an answer then. Psychgenic makes me laugh... I don't have time for make believe Symptoms!
 
I also feel like I have had some slight wasting on my legs, although I didn't measure before and after so I don't have any solid proof, but both thighs are smaller. I have lost 10-12 pounds in the last month alone.
 
Loosing as much weight as you have would naturally make your muscles look smaller. Wasting from ALS is usually not "slight".

Is your weakness consistent and it has been worsening?

Have you been tested for neuropathies or mitochondrial disease?

I am not a doctor, just a medical student, but I think a lot points towards something similar to MS, but then with the absense of oligoclonal bands.

Ask for a new EMG when you see a new neurologist, I hope you get some answers!
 
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