I have made a few posts here and there and have spoke with a few of you, but now I need to please get all this off my chest because I can't sleep and it's eating me up inside. I apologize for the long post, but I want to give you some history.
It is coming up 3 years ago that I lost my mom to cancer. We were very close and my sister and I cared for her until the very end when I brought her home to die at my house.
Two years later I begin worrying excessively about my health. I worried about breast cancer for a while. Then back in Nov. of last year I woke up one morning with the worst headache of my life. My in-laws took the kids to school and me to the ER. Once there they did a CT scan - normal. To be sure I didn't have a brain bleed they would need to do a lumbar puncture. Something in me just did not want that thing. The doctor came in to do it and I didn' t feel confident in him (even the nurse was questioning him). He stabbed me three times and had much difficulty and contaminated one sample with blood. The test came back with protein and RBCs. They started treating me with Cipro antibiotics in case it was meningitis. A few days later I was sent home and had a horrible headache for many weeks. Around the same time I started having all-over body twitches.
My Doctor sent me to a neurologist for the headache. When I went for my follow-up appointment last March, I mentioned the twitching. He asked if it was localized and I said it was all over. He told me they were benign fasciculations.
The summer went pretty good, but still twitching all over. I did some research and found ALS. This scared me, but at least all I had was the twitching. Over the summer my wrists became more and more sore when I would bear weight on them, like to do a push-up or get out of bed. My right hand often felt stiff and just very slightly more "clumsy' in my pinky finger and the one next (for all I knew, maybe it was always that way - but I'm right handed). Finally I went to the Dr. She did x-rays and blood tests. When they came back normal she sent me to a physiotherapist.
The PT did a very thorough exam and pointed out that I have thenar atrophy likely from a nerve compression. He said my back is very stiff, especially on the right side so he is working to loosen it up. Because of my "research" on ALS, I nearly fainted when I heard the word "atrophy"! Fasciculations now atrophy?!?
Back to my Dr. I went. She said that I am likely over reacting and that she doesn't see anything to suggest ALS - I have no objective weakness and a super grip strength. All she sees is minor atrophy that was explained by the PT. To put my mind at ease, she is sending me back to the neurologist (appointment in January!).
The next week was a blurr and I had one panic attack after another. I keep checking my hands and feet and grip strength 100's of times a day looking for more atrophy, some kind of change. My whole body feels weak and my legs feel like jello and all of a sudden my exercise tolerance seems to have decreased, although I am still very strong at the gym. On and off, my feet hurt very badly and I have a constant burning sensation in my back and shoulders. Today I almost had a heart attack when I saw some very minor twitching-like movement in the atrophied area of my hand after I exercised it. I think I am going crazy!
I live in Guelph, On and want to be referred to the Londaon ALS clinic lead by Michael Strong - but my Dr. is sending me to my local neuro first. I have briefly corresponded with Michael Strong via email and he seems very nice - I'd just like to go to him right now!
Well, here it is Christmas time and I'm worried sick - not eating or sleeping well (lost 10 lbs so far). I won't see the neuro until some time in the new year and I feel like I am in hell just waiting and praying. I want to know for sure...but then again I don't. I am so torn up inside and doing my best to maintain a positive attitude and make this a good Christmas for my kids - I'm so worried for them. Sometimes I try to ignore it, but it won't go away.
There are several people around me who think my anxiety has made these "symptoms" worse and I can even believe that to an extent myself. They all treat me very well, but given my anxious history, I don't think any of them believes this could be ALS. I just pray that this will turn out to be something that I am making a big deal over. I am only 40 and I have two kids: 4 and 7. I want to see them grow up. I have dreams that they need to be picked up from school and I can't move. This fear is paralysing. I don't know if I can face going through this in front of them.
Thanks for letting me vent.
Nicole.
It is coming up 3 years ago that I lost my mom to cancer. We were very close and my sister and I cared for her until the very end when I brought her home to die at my house.
Two years later I begin worrying excessively about my health. I worried about breast cancer for a while. Then back in Nov. of last year I woke up one morning with the worst headache of my life. My in-laws took the kids to school and me to the ER. Once there they did a CT scan - normal. To be sure I didn't have a brain bleed they would need to do a lumbar puncture. Something in me just did not want that thing. The doctor came in to do it and I didn' t feel confident in him (even the nurse was questioning him). He stabbed me three times and had much difficulty and contaminated one sample with blood. The test came back with protein and RBCs. They started treating me with Cipro antibiotics in case it was meningitis. A few days later I was sent home and had a horrible headache for many weeks. Around the same time I started having all-over body twitches.
My Doctor sent me to a neurologist for the headache. When I went for my follow-up appointment last March, I mentioned the twitching. He asked if it was localized and I said it was all over. He told me they were benign fasciculations.
The summer went pretty good, but still twitching all over. I did some research and found ALS. This scared me, but at least all I had was the twitching. Over the summer my wrists became more and more sore when I would bear weight on them, like to do a push-up or get out of bed. My right hand often felt stiff and just very slightly more "clumsy' in my pinky finger and the one next (for all I knew, maybe it was always that way - but I'm right handed). Finally I went to the Dr. She did x-rays and blood tests. When they came back normal she sent me to a physiotherapist.
The PT did a very thorough exam and pointed out that I have thenar atrophy likely from a nerve compression. He said my back is very stiff, especially on the right side so he is working to loosen it up. Because of my "research" on ALS, I nearly fainted when I heard the word "atrophy"! Fasciculations now atrophy?!?
Back to my Dr. I went. She said that I am likely over reacting and that she doesn't see anything to suggest ALS - I have no objective weakness and a super grip strength. All she sees is minor atrophy that was explained by the PT. To put my mind at ease, she is sending me back to the neurologist (appointment in January!).
The next week was a blurr and I had one panic attack after another. I keep checking my hands and feet and grip strength 100's of times a day looking for more atrophy, some kind of change. My whole body feels weak and my legs feel like jello and all of a sudden my exercise tolerance seems to have decreased, although I am still very strong at the gym. On and off, my feet hurt very badly and I have a constant burning sensation in my back and shoulders. Today I almost had a heart attack when I saw some very minor twitching-like movement in the atrophied area of my hand after I exercised it. I think I am going crazy!
I live in Guelph, On and want to be referred to the Londaon ALS clinic lead by Michael Strong - but my Dr. is sending me to my local neuro first. I have briefly corresponded with Michael Strong via email and he seems very nice - I'd just like to go to him right now!
Well, here it is Christmas time and I'm worried sick - not eating or sleeping well (lost 10 lbs so far). I won't see the neuro until some time in the new year and I feel like I am in hell just waiting and praying. I want to know for sure...but then again I don't. I am so torn up inside and doing my best to maintain a positive attitude and make this a good Christmas for my kids - I'm so worried for them. Sometimes I try to ignore it, but it won't go away.
There are several people around me who think my anxiety has made these "symptoms" worse and I can even believe that to an extent myself. They all treat me very well, but given my anxious history, I don't think any of them believes this could be ALS. I just pray that this will turn out to be something that I am making a big deal over. I am only 40 and I have two kids: 4 and 7. I want to see them grow up. I have dreams that they need to be picked up from school and I can't move. This fear is paralysing. I don't know if I can face going through this in front of them.
Thanks for letting me vent.
Nicole.