Aa
my story
Hi. I'm Helen from BC Canada. I have a timeline of my symptoms under my journal.
I've been avidly reading posts on this forum, MS, Neurology, and Chronic fatigue for a while. I just don't know where I fit (aside from this forum LOL). I've been off sick for a year now, with exhaustion, burning muscles, poor balance and tingling. I recently had an MRI that was without contrast on an open 1.5 machine. They found no significant lesions, and I even went so far as to have an independent company read it. They said it was incomplete, but also said there was nothing of significance on the film and they didn't think doing another would be a good use of my money.
Ok, deep breath, off I go to physio to see if they can help with my balance. (The previous physio said he didn't want to follow me for fear there was a neuro problem, but wouldn't put it in writing when I asked him to write a note re his findings). This physio says my reflexes are ok, I have muscle atrophy and femoral nerve entrapment from surgery I had last fall. I decided to stop seeking out more tests and accept that I suddenly came down with narcolepsy, chronic fatigue and functional muscle problems. For the last 2 days one eye is blurry and I can't read with it. Now I'm wondering if I have optic neuritis, which opens all my questions once again.
It's hard to keep a healthy balance, trying to find a diagnosis but resisting spending all my energy on it, then my body keeps poking me with extra reminders I'm not ok. I'm grateful to connect with people going through similar difficulties.
I've been avidly reading posts on this forum, MS, Neurology, and Chronic fatigue for a while. I just don't know where I fit (aside from this forum LOL). I've been off sick for a year now, with exhaustion, burning muscles, poor balance and tingling. I recently had an MRI that was without contrast on an open 1.5 machine. They found no significant lesions, and I even went so far as to have an independent company read it. They said it was incomplete, but also said there was nothing of significance on the film and they didn't think doing another would be a good use of my money.
Ok, deep breath, off I go to physio to see if they can help with my balance. (The previous physio said he didn't want to follow me for fear there was a neuro problem, but wouldn't put it in writing when I asked him to write a note re his findings). This physio says my reflexes are ok, I have muscle atrophy and femoral nerve entrapment from surgery I had last fall. I decided to stop seeking out more tests and accept that I suddenly came down with narcolepsy, chronic fatigue and functional muscle problems. For the last 2 days one eye is blurry and I can't read with it. Now I'm wondering if I have optic neuritis, which opens all my questions once again.
It's hard to keep a healthy balance, trying to find a diagnosis but resisting spending all my energy on it, then my body keeps poking me with extra reminders I'm not ok. I'm grateful to connect with people going through similar difficulties.
Hi Helen41, Thanks for letting us read your timeline/story. It has been a tough road for you. It is a tightrope we walk trying to get help and then trying to live as normal as possible. It really can become a nightmare, and it's easy to spend too much time on it.
Just today I was doing alot of research and realized that I needed to get away for a while. So I watched videos that I love.
It would be a good thing to have your eye looked at. If it is Optic Neuritis you need to have that in your record.
Remember that we are in this together!!
Just today I was doing alot of research and realized that I needed to get away for a while. So I watched videos that I love.
It would be a good thing to have your eye looked at. If it is Optic Neuritis you need to have that in your record.
Remember that we are in this together!!
sorry- I thought I was posting under the introduce yourself thread, not a new one
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