Krfbmk
New member
- Joined
- Sep 18, 2016
- Messages
- 4
- Reason
- Learn about ALS
- Country
- CA
- State
- Ontario
- City
- Ottawa
Hey forum..
38 year old male here from Canada..
I have been struggling with some not so nice symptoms since February 15, 2016. I will try my best not do give you an extremely long story, as I have noticed when people reach out for help it sometimes can lead to writing a novel, and I don't want to lose anyone because of an overly long post.
One morning I woke, and went to take a shower, and all of a sudden I was having a standing balance issue. Not dizzy, just unsteady. This has NEVER gone away, and it's with me all day. I have been to a few hospitals and they all told me it was either vertigo or anxiety. After seeing my fam doctor she referred me to a neurologist, and I have also seen a internalist doctor. The neuro was a joke and didn't even properly asses me. He started sending me for sleep studies, and after doing a few of them, it turned out that he actually attached my name to the wrong file, and I was doing tests that weren't even related to my symptoms. I asked to see a second neurologist and he told me from my symptoms that I explained to him it sounded like it could be stiff man's disease and or early onset of Parkinson's, but he didn't want to commit to an actual diagnoses, and said that the stiff mans disease would be one in a million. I had to debate with the neuro to even get an EMG, which is next week. It just feels like everyone is sweeping this under the rug and nobody is taking me too seriously. I don't do drugs, drink, and or smoke. I am straight edged and know when something is wrong with my body, and I'm in trouble.
Anyway, my symptoms are as follows, postural instability, but my walking is fine, although sometimes my leg on the left side gives out. Pins and needles down my legs, and sometimes in my face. Super cold feet, and sometimes hands. Still have strength, but I am also developing a small tremor throughout my whole body in both my hands and legs, but only when I make movements. I'm dropping things a lot, and becoming very clumsy. Cognitively I've taken a hit too, and I scramble for words, and sometimes get confused real easy. I have extreme stiffness in my shoulders (neck & shoulders) like a coat hanger, and sore joints in my elbows, and hip. I also get mucsle twitches through my body, and sometimes they hurt too. I have had MRI's in February, March, June, all for my head, neck, and spine, everything came back clear, but they did find some mild arthritis in my C7 spine, but they said this is normal, and in my lumbar spine they found a minor disc bulge and a small annular tear, but they said that these things would not be causing my symptoms. I have had tons of blood work, and no signs of infection, and no diabetes, my b12 levels were good also, and no thyroid issues. Even as I type this I am feeling a weird sensation, almost like I know I am typing, but it kind of feels like my hands aren't my own. I also have tinnitus, sometimes blurred vision that comes and goes, and now blood pressure problems as well 155/101, and honestly it just feels like my body is attacking myself, and my brain is frying. Sometimes my legs also feel very heavy.
I have no wife or kids, and not a lot of friends, and I feel like I am at the edge of my mental health, and the fact that this has been going on for over 8 months with no diagnoses, I'm getting scared now that I am slowly passing away. I have spent thousands of dollars on eye tests, chiropractors, acupuncture, physio, and no relief.
Anyway, the reason I'm here on this forum is because my internalist found in my blood work that my CK levels was high, like at 1300 compared to the normal 180. After a few more tests and plenty of water, my levels have gone back down to 189. My family doctor told me that she was worried about ALS, but after the CK level went down, she wasn't as worried. I do have an EMG test coming up on October the 4th. Is there anything I should know? Any good questions to ask? If I have an abnormal test, does this mean I have ALS? If I have an abnormal test should I then ask for a nerve study? What will a nerve study test show? I try not to google my symptoms as it only ads to my anxiety, but according to google it seems like a neurological issue, either MS, ALS, or Parkinson's.
I am isolating myself, and I'm more worried about becoming so sick, that I won't even be aware that I am sick..If that even makes any sense. I own a home and am now on LTD, but my finances are running out, and so is my energy.
And you know what? I wrote a novel..
Sorry
Please help...
38 year old male here from Canada..
I have been struggling with some not so nice symptoms since February 15, 2016. I will try my best not do give you an extremely long story, as I have noticed when people reach out for help it sometimes can lead to writing a novel, and I don't want to lose anyone because of an overly long post.
One morning I woke, and went to take a shower, and all of a sudden I was having a standing balance issue. Not dizzy, just unsteady. This has NEVER gone away, and it's with me all day. I have been to a few hospitals and they all told me it was either vertigo or anxiety. After seeing my fam doctor she referred me to a neurologist, and I have also seen a internalist doctor. The neuro was a joke and didn't even properly asses me. He started sending me for sleep studies, and after doing a few of them, it turned out that he actually attached my name to the wrong file, and I was doing tests that weren't even related to my symptoms. I asked to see a second neurologist and he told me from my symptoms that I explained to him it sounded like it could be stiff man's disease and or early onset of Parkinson's, but he didn't want to commit to an actual diagnoses, and said that the stiff mans disease would be one in a million. I had to debate with the neuro to even get an EMG, which is next week. It just feels like everyone is sweeping this under the rug and nobody is taking me too seriously. I don't do drugs, drink, and or smoke. I am straight edged and know when something is wrong with my body, and I'm in trouble.
Anyway, my symptoms are as follows, postural instability, but my walking is fine, although sometimes my leg on the left side gives out. Pins and needles down my legs, and sometimes in my face. Super cold feet, and sometimes hands. Still have strength, but I am also developing a small tremor throughout my whole body in both my hands and legs, but only when I make movements. I'm dropping things a lot, and becoming very clumsy. Cognitively I've taken a hit too, and I scramble for words, and sometimes get confused real easy. I have extreme stiffness in my shoulders (neck & shoulders) like a coat hanger, and sore joints in my elbows, and hip. I also get mucsle twitches through my body, and sometimes they hurt too. I have had MRI's in February, March, June, all for my head, neck, and spine, everything came back clear, but they did find some mild arthritis in my C7 spine, but they said this is normal, and in my lumbar spine they found a minor disc bulge and a small annular tear, but they said that these things would not be causing my symptoms. I have had tons of blood work, and no signs of infection, and no diabetes, my b12 levels were good also, and no thyroid issues. Even as I type this I am feeling a weird sensation, almost like I know I am typing, but it kind of feels like my hands aren't my own. I also have tinnitus, sometimes blurred vision that comes and goes, and now blood pressure problems as well 155/101, and honestly it just feels like my body is attacking myself, and my brain is frying. Sometimes my legs also feel very heavy.
I have no wife or kids, and not a lot of friends, and I feel like I am at the edge of my mental health, and the fact that this has been going on for over 8 months with no diagnoses, I'm getting scared now that I am slowly passing away. I have spent thousands of dollars on eye tests, chiropractors, acupuncture, physio, and no relief.
Anyway, the reason I'm here on this forum is because my internalist found in my blood work that my CK levels was high, like at 1300 compared to the normal 180. After a few more tests and plenty of water, my levels have gone back down to 189. My family doctor told me that she was worried about ALS, but after the CK level went down, she wasn't as worried. I do have an EMG test coming up on October the 4th. Is there anything I should know? Any good questions to ask? If I have an abnormal test, does this mean I have ALS? If I have an abnormal test should I then ask for a nerve study? What will a nerve study test show? I try not to google my symptoms as it only ads to my anxiety, but according to google it seems like a neurological issue, either MS, ALS, or Parkinson's.
I am isolating myself, and I'm more worried about becoming so sick, that I won't even be aware that I am sick..If that even makes any sense. I own a home and am now on LTD, but my finances are running out, and so is my energy.
And you know what? I wrote a novel..
Sorry
Please help...