Okay, this forum must get all sorts of hypochondriacs posting "do I have it messages." Problem is, since ALS has no definitive test, one wonders if patients with ALS aren't the most reliable in getting a diagnosis. PCP's seem to brush it off and not even consider it. Here is my situation:
I'm a male 44 that was in decent shape. I used to mountain bike and hike quite a bit. I love to hunt and fish. 6'2", 225 lbs in December 2010. About a year ago I noticed that I didn't have quite the strength that I had a few years ago. My 18 year old son could move anything, and I felt that I couldn't. I attributed to getting older. Muscle waste usually begins in the 40's. I thought about working out again.
Then this Fall, I started having a metallic, bitter taste in my mouth. Went on line, and found that lots of people have this. This past Christmas, my stomach became quite gassy and upset, but along with it I had this odd sort of pelvic pain. Numbness, tight muscles like feeling. The doc ordered a CT and found diverticulosis. He then ordered a colonoscopy and confirmed doverticulosis with resolving possible diverticulitis. All this time I was having odd intestinal issues that would wake me up in the morning. Sometime between the CT and colonoscopy (Jan-Feb) I woke up one morning and felt a little weakness in my left leg - right below the buttucks. I had pulled my back a little in November, so I thought it just to be that. But it progressed to toe numbness and a little lower leg weakness. Then I began to feel sciatic-like pain. I spent hours on the internet trying to figure it out. While on the internet, my left hand began to just bother me. It seemed nerved up and weak. It would come and go, but then I noticed as I was having trouble sleeping because of the sciatic pain that the arm would act up. My Eustachian tubes were clogging all the time and made me feel a bit uneasy at times. The sciatic pain was weird, crampy, numbing, and weakening. It kept me up at night. I finally went into the ER because my PCP wouldn't see me for 3 weeks. The put me on prednisone and gave me vicodin andn naproxyn for the pain. I used the vicodin for one night to get some sleep and the naproxyn off and on. I started noticing muscle twitches, but not a lot. My left arm seemed to get worse. In a month I dropped from 225 to 210. Now I have definite weakness that migrates (mostly on left) between both legs and I have it in the left arm. My buttucks seems to have lost some meat as well as my chest.
I went into my PCP shortly after the ER visit and he didn't even consider ALS. Although I didn't bring it up. I was thinking MS. He took xrays and found that my lowest lumbar was quite unhinged. Something about one of the struts holding the vertebrae to the next was gone and the vertebrae was cattywampus. He thinks he has found the problem. But the next day my arm weakness really ups itself. I noticed today that I can't make a firm chest muscle like I could just a few weeks ago. The sciatic pain is mostly gone although the leg and toe numbness remain. I can still do everything, although some days I really feel tired in the morning like I can't get enough air. I worry that this is ALS, but it might just be anxiety.
Everything seems to be moving so fast and the symptoms seemed to start in odd places. Does ALS ever present like this?
How does one get a doctor to really look seriously at this?
VC
I'm a male 44 that was in decent shape. I used to mountain bike and hike quite a bit. I love to hunt and fish. 6'2", 225 lbs in December 2010. About a year ago I noticed that I didn't have quite the strength that I had a few years ago. My 18 year old son could move anything, and I felt that I couldn't. I attributed to getting older. Muscle waste usually begins in the 40's. I thought about working out again.
Then this Fall, I started having a metallic, bitter taste in my mouth. Went on line, and found that lots of people have this. This past Christmas, my stomach became quite gassy and upset, but along with it I had this odd sort of pelvic pain. Numbness, tight muscles like feeling. The doc ordered a CT and found diverticulosis. He then ordered a colonoscopy and confirmed doverticulosis with resolving possible diverticulitis. All this time I was having odd intestinal issues that would wake me up in the morning. Sometime between the CT and colonoscopy (Jan-Feb) I woke up one morning and felt a little weakness in my left leg - right below the buttucks. I had pulled my back a little in November, so I thought it just to be that. But it progressed to toe numbness and a little lower leg weakness. Then I began to feel sciatic-like pain. I spent hours on the internet trying to figure it out. While on the internet, my left hand began to just bother me. It seemed nerved up and weak. It would come and go, but then I noticed as I was having trouble sleeping because of the sciatic pain that the arm would act up. My Eustachian tubes were clogging all the time and made me feel a bit uneasy at times. The sciatic pain was weird, crampy, numbing, and weakening. It kept me up at night. I finally went into the ER because my PCP wouldn't see me for 3 weeks. The put me on prednisone and gave me vicodin andn naproxyn for the pain. I used the vicodin for one night to get some sleep and the naproxyn off and on. I started noticing muscle twitches, but not a lot. My left arm seemed to get worse. In a month I dropped from 225 to 210. Now I have definite weakness that migrates (mostly on left) between both legs and I have it in the left arm. My buttucks seems to have lost some meat as well as my chest.
I went into my PCP shortly after the ER visit and he didn't even consider ALS. Although I didn't bring it up. I was thinking MS. He took xrays and found that my lowest lumbar was quite unhinged. Something about one of the struts holding the vertebrae to the next was gone and the vertebrae was cattywampus. He thinks he has found the problem. But the next day my arm weakness really ups itself. I noticed today that I can't make a firm chest muscle like I could just a few weeks ago. The sciatic pain is mostly gone although the leg and toe numbness remain. I can still do everything, although some days I really feel tired in the morning like I can't get enough air. I worry that this is ALS, but it might just be anxiety.
Everything seems to be moving so fast and the symptoms seemed to start in odd places. Does ALS ever present like this?
How does one get a doctor to really look seriously at this?
VC