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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Fear of ALS
Dec 4, 2017
Hi all,

I will try and make this short and sweet. My first post got redirected then deleted since I wasn't signed in. Oops.

Anyway, I'm a 40 year old male. Relatively healthy- non drinker, non smoker. I keep a good diet and have no family history of neurological disorders but I was diagnosed in 2010 with chronic pelvic pain syndrome.

This all started back in April with some pain in my left calf. At first it was just an ache in my bone, then I'd experience these sharp shooting almost electrical pains that would shoot up my leg towards my knee. Slight RLS symptoms and some nerve twitches but the nerve twitches I have had for quite a while- stress and anxiety make those puppies worse.

Anyway, one Sunday afternoon after self diagnosing with Dr. Google and scaring myself into a panic (Dr. Google told me I had diabetes, deep vein thrombosis, heart failure- according to Dr. Google- I was dying!) I drove myself to the nearest hospital. There they did a blood work up to cancel out all those baddies, followed by an xray which prompted an ultrasound. In my xray they found a mass on my gastrocnemius muscle. The ultrasound ruled out any cancerous growth and they described my malady as an old traumatic injury though I can't recall ever having a traumatic injury on my left leg. After this I made an appointment with my PCP and he put in a referral for an orthopedic appointment. Let this be known, I don't have the greatest insurance so there's a lot of waiting since April...

The orthopedic ran the usual tests: strength, reflex ( a little hyper reflexive on my left leg), balance, watch her finger from side to side, etc; and she noticed minimal calf wasting. This prompted an EMG. Again all those tests came out pretty normal barring a small 'leak' in my L4-L5. No foot drop, no weird gait when I walk- no panic yet...
This prompted an MRI, they ran 2 tests and I learned that I'm very claustrophobic. In the tests, again just atrophy on my gastrocnemius muscle but they found a Bakers cyst behind my knee. This test was done on October 11th, my follow up was November 9th and the doctor played up the 'we hit a wall' even though they haven't done too much and my tests have been identical going back to April except now I have a Bakers cyst that he can't aspirate. This is when he brought ALS into my life: ' need to run more tests with neurology to rule out ALS'. I know he said 'rule out but he also said 'ALS.

Since that day I've been in fight or flight mode. I honestly thought my condition was an entrapped nerve caused by the cyst which can lead to muscle wasting. I thought my worst case scenario was surgery, not that I could be dead in 3 to 5 years. My anxiety was brutal, not to mention neurology calls me the next week and says I'm approved but there's no appointments available.

My only hope through all of this is I still have my strength and I've been going to a deep tissue massage therapist and have been seeing a little of my muscle mass improving. She didn't even know which leg was having the atrophy. My worst symptoms seem to be stress and anxiety and not being able to talk with these doctors and definitely feeling like they are not listening to me describing my symptoms. Frustrating, scary- It's been quite a ride. So I was wondering if anybody had any insight to what this could be. Is it ALS? Could it be any other neurothapy? I understand there's hundreds of things this could be, it's just he mentioned 'ALS', and I've always been somewhat of a hypochondriac, so this has been difficult. Any suggestions or words of encouragement would be appreciated.

Thank you,
Chris





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