Red2227
New member
- Joined
- Sep 8, 2015
- Messages
- 2
- Reason
- Other
- Country
- US
- State
- New York
- City
- Chappaqua
Hello all,
Firstly I wanted to say that I read your note to new members and so I believe what I am posting is legitimate (though I would love for you to tell me I'm being crazy, I'm not longer sure of this). I have been reading these forums for months now and am only just posting because I am finally beyond myself and truly feel my body changing. Okay here goes yet another long ramble from a scared person and I am really sorry in advance if it jumps around a lot and sounds crazy...
The Symptoms:
A year ago I noticed I was simply fatiguing during exercise quickly, thought nothing of it, but no matter what I did, this feeling of fatigue accompanied me (especially while rock climbing- I used to be a big climber) and my legs always felt stiff (I'm also a dancer) and wouldn't go away, and my balance started to become worse. Then I started noticing tremors in my hands. Next came the fasciculations, by this time I had started searching on my own because I was getting no answers and yes-- the internet lead me here and so the true terror set in. Then i noticed literally every joint in my body would shake from doing simple tasks. And then my left hand started to have trouble typing.
This was all in the last 6 months. This week (after a second round of antibiotics I must add) my balance is really off. I mean I can feel myself waving around, and my butt is sore from standing because I think I'm working harder, and my legs shake when I try to walk a straight line (I can walk the line though). Today (after many doctors) I saw a new GP who said my leg reflexes seemed above average and the reflexes between my arms didn't match. I am now terrified, however now let me explain the doctors before this one....
The Doctors:
There were many hypotheses from my doctor and an enormous amount of blood tests done. Nothing came back. I spent months taking supplements and they had no effect on my condition. This is where I am going to ask for your patience in reading the entirety of my experience because I did go to a neurologist whose specialty is MS. I understand this man has had years of medical training and would know ALS when he sees it. He performed the regular neuro exams and said I looked okay and diagnosed me with BFS and an essential tremor and maybe chronic fatigue and sent me on my way.
Everything just kept getting worse and so I decided to seek a new neurologist who would give me an MRI and EMG just to rule out my fears. Unfortunately this doctor immediately read my other doctors notes and felt I was being ridiculous. I need to say, and I'm sure you've heard it before, that these men both treated me like a hysterical woman and did not take my fears seriously, offering little explanations or guidance. The second neuro said he expected my EMG to come back dirty and to show carpal tunnel syndrome in my left hand. My MRI came back clear of any lesions, and the doctor didn't discuss my EMG results, just said "yup, looks normal to me!" said I had the same thing as the doctor before him. the results said I do not have carpal tunnel (there is NO PAIN involved in this). I finally got my EMG results and obviously I cannot really understand it but it looks to me like there are discrepancies between my two arms/hands that the doctor chose not to disclose. These results do say that the study revealed no evidence of peripheral neuropathy or cervical radiculopathy. Said I did show a tiny bit of disc degeneration in my cervical spinal area but apparently nothing to be alarmed about?
Physical therapy was recommended. I've been doing physically therapy. The thing that really scares me now is this new doctors comment about my legs and arms, and the fact that I feel my balance is way off and I have to work harder to maintain it. I do not have any signs of true muscles weakness though.
Please, does anyone have any thoughts? I am so confused and now back to be so scared.
Thank you so much for reading.
-Red
Firstly I wanted to say that I read your note to new members and so I believe what I am posting is legitimate (though I would love for you to tell me I'm being crazy, I'm not longer sure of this). I have been reading these forums for months now and am only just posting because I am finally beyond myself and truly feel my body changing. Okay here goes yet another long ramble from a scared person and I am really sorry in advance if it jumps around a lot and sounds crazy...
The Symptoms:
A year ago I noticed I was simply fatiguing during exercise quickly, thought nothing of it, but no matter what I did, this feeling of fatigue accompanied me (especially while rock climbing- I used to be a big climber) and my legs always felt stiff (I'm also a dancer) and wouldn't go away, and my balance started to become worse. Then I started noticing tremors in my hands. Next came the fasciculations, by this time I had started searching on my own because I was getting no answers and yes-- the internet lead me here and so the true terror set in. Then i noticed literally every joint in my body would shake from doing simple tasks. And then my left hand started to have trouble typing.
This was all in the last 6 months. This week (after a second round of antibiotics I must add) my balance is really off. I mean I can feel myself waving around, and my butt is sore from standing because I think I'm working harder, and my legs shake when I try to walk a straight line (I can walk the line though). Today (after many doctors) I saw a new GP who said my leg reflexes seemed above average and the reflexes between my arms didn't match. I am now terrified, however now let me explain the doctors before this one....
The Doctors:
There were many hypotheses from my doctor and an enormous amount of blood tests done. Nothing came back. I spent months taking supplements and they had no effect on my condition. This is where I am going to ask for your patience in reading the entirety of my experience because I did go to a neurologist whose specialty is MS. I understand this man has had years of medical training and would know ALS when he sees it. He performed the regular neuro exams and said I looked okay and diagnosed me with BFS and an essential tremor and maybe chronic fatigue and sent me on my way.
Everything just kept getting worse and so I decided to seek a new neurologist who would give me an MRI and EMG just to rule out my fears. Unfortunately this doctor immediately read my other doctors notes and felt I was being ridiculous. I need to say, and I'm sure you've heard it before, that these men both treated me like a hysterical woman and did not take my fears seriously, offering little explanations or guidance. The second neuro said he expected my EMG to come back dirty and to show carpal tunnel syndrome in my left hand. My MRI came back clear of any lesions, and the doctor didn't discuss my EMG results, just said "yup, looks normal to me!" said I had the same thing as the doctor before him. the results said I do not have carpal tunnel (there is NO PAIN involved in this). I finally got my EMG results and obviously I cannot really understand it but it looks to me like there are discrepancies between my two arms/hands that the doctor chose not to disclose. These results do say that the study revealed no evidence of peripheral neuropathy or cervical radiculopathy. Said I did show a tiny bit of disc degeneration in my cervical spinal area but apparently nothing to be alarmed about?
Physical therapy was recommended. I've been doing physically therapy. The thing that really scares me now is this new doctors comment about my legs and arms, and the fact that I feel my balance is way off and I have to work harder to maintain it. I do not have any signs of true muscles weakness though.
Please, does anyone have any thoughts? I am so confused and now back to be so scared.
Thank you so much for reading.
-Red