Hi, had my appt with the neuro and some things were OK and some things not so much.
Went to teaching/research hospital so I got the doctor who is still learning see me first.
She took a history, I gave her a copy of my sx notes which I told her she was welcome to have as I need them as I often forget when I’m in an appt what and when stuff has happened to me. While taking my history she asked me when a certain sx happened and I said that I couldn’t remember and then I blanked.
She snapped at me when I said I needed to get my notes out. I faced her and bluntly stated that right now my mind is blank and I explained three possible reasons why my mind may be blank. I then took the time to take out my notes and reviewed them so I could tell her when a certain symptom started.
She also asked me what I thought was wrong with me and I started to say that my GP has always thought it was MS and then she snapped at me again and said, no I want you to tell me what you think is wrong with you. So I said that I have clearly been living with neurological problems that come and go for many years.
She did some neuro testing. I couldn’t lift my thigh muscles off the examination table to push up her hands. She said push up. My husband finally said “she is!” And the doctor said oh.
She also had me try and track an object or light (sorry can’t remember) and it was painful using my left eye and so I kept rolling my head and pulling my head away. I had to pretend to open a doorknob and my left hand was all weird. I said to my husband what the heck is this?
Then she left for a while and returned with the specialist. The neuro told me that what I have is not degenerative.
She didn’t look at my MRIs and she said you have no lesions. I corrected her and said that my second last one had lesions. She decided to just take what she called the bias of the person who originally read it on my more recent report.
She had notes on the computer from my last neuro who said it was all in my head.
I had to stop her at one point and ask her for confirmation if she was just looking at me from a movement disorders point of view or if she was looking at my whole history. She was basically focussing on my gait/walk and so my headaches and all other stuff was not being considered.
She asked if she could keep the copy of my video of me walking and using stairs as she wanted to get the opinion of some other doctors and those that are in training and I agreed as she said that someone else may have an idea of what was going on with my walk/gait.
She said that she is going to consider genetic testing for something that she didn’t name but would think about it first.
She also said I could have a rare form of a disorder that is brought on by exercise. However, she was not happy with my walk/gait and said that I need to start exercising. She doesn’t want me to walk.
She wants me to do yoga or use those stair climbing things and I balked because I told her that exercise is one of my triggers.
She was concerned that if I don’t exercise that I wouldn’t be able to walk more than two block again or I could get worse. But I had to pry the reason why she wanted me to exercise out of her.
I told her that exercise can leave me with deep bone pain for three weeks and without adequate pain control leaving me in agony and crying for weeks on end.
I said I wasn’t adverse to exercise I just needed her to understand that I was physically fit and slender when I first went to the doctor about my legs hurting many years ago. I’ve tried exercising since and I even used a stationary bike but because I leaned forward on it while pedalling I ended up in a recliner for seven weeks with TMJ or TN - they’re not sure which.
I listened to her tell me that she’s seen psychogenic illness similar to how I present in many people before me. So once again it could be the neuros vs the psychs.
I told her that I had overdone it on the weekend and so I was a bit worse than usual. She had me walk. She had me walk backwards and much to my surprise I walk with a wide, weird backwards movement.
She had me run and my arms did the bionic man thing, my feet were trying to get going and my legs weren’t getting the message. I can’t run.
She tried to pull me backwards by standing behind me and pulling me from the front of my shoulders. I stepped back a couple of times and got a bit shaky the second and third time because it’s like having someone say Boo! behind you. Didn’t like that feeling.
I’m to see her again in a few months. I’m to see a neuro PT to help figure out what exercise will work for me but need to discuss my problems with my GP about this because he knows my history of exercise and pain.
The next day my company said they’re cancelling my benefits and so now I can’t afford a neuro PT. Great.
Went to teaching/research hospital so I got the doctor who is still learning see me first.
She took a history, I gave her a copy of my sx notes which I told her she was welcome to have as I need them as I often forget when I’m in an appt what and when stuff has happened to me. While taking my history she asked me when a certain sx happened and I said that I couldn’t remember and then I blanked.
She snapped at me when I said I needed to get my notes out. I faced her and bluntly stated that right now my mind is blank and I explained three possible reasons why my mind may be blank. I then took the time to take out my notes and reviewed them so I could tell her when a certain symptom started.
She also asked me what I thought was wrong with me and I started to say that my GP has always thought it was MS and then she snapped at me again and said, no I want you to tell me what you think is wrong with you. So I said that I have clearly been living with neurological problems that come and go for many years.
She did some neuro testing. I couldn’t lift my thigh muscles off the examination table to push up her hands. She said push up. My husband finally said “she is!” And the doctor said oh.
She also had me try and track an object or light (sorry can’t remember) and it was painful using my left eye and so I kept rolling my head and pulling my head away. I had to pretend to open a doorknob and my left hand was all weird. I said to my husband what the heck is this?
Then she left for a while and returned with the specialist. The neuro told me that what I have is not degenerative.
She didn’t look at my MRIs and she said you have no lesions. I corrected her and said that my second last one had lesions. She decided to just take what she called the bias of the person who originally read it on my more recent report.
She had notes on the computer from my last neuro who said it was all in my head.
I had to stop her at one point and ask her for confirmation if she was just looking at me from a movement disorders point of view or if she was looking at my whole history. She was basically focussing on my gait/walk and so my headaches and all other stuff was not being considered.
She asked if she could keep the copy of my video of me walking and using stairs as she wanted to get the opinion of some other doctors and those that are in training and I agreed as she said that someone else may have an idea of what was going on with my walk/gait.
She said that she is going to consider genetic testing for something that she didn’t name but would think about it first.
She also said I could have a rare form of a disorder that is brought on by exercise. However, she was not happy with my walk/gait and said that I need to start exercising. She doesn’t want me to walk.
She wants me to do yoga or use those stair climbing things and I balked because I told her that exercise is one of my triggers.
She was concerned that if I don’t exercise that I wouldn’t be able to walk more than two block again or I could get worse. But I had to pry the reason why she wanted me to exercise out of her.
I told her that exercise can leave me with deep bone pain for three weeks and without adequate pain control leaving me in agony and crying for weeks on end.
I said I wasn’t adverse to exercise I just needed her to understand that I was physically fit and slender when I first went to the doctor about my legs hurting many years ago. I’ve tried exercising since and I even used a stationary bike but because I leaned forward on it while pedalling I ended up in a recliner for seven weeks with TMJ or TN - they’re not sure which.
I listened to her tell me that she’s seen psychogenic illness similar to how I present in many people before me. So once again it could be the neuros vs the psychs.
I told her that I had overdone it on the weekend and so I was a bit worse than usual. She had me walk. She had me walk backwards and much to my surprise I walk with a wide, weird backwards movement.
She had me run and my arms did the bionic man thing, my feet were trying to get going and my legs weren’t getting the message. I can’t run.
She tried to pull me backwards by standing behind me and pulling me from the front of my shoulders. I stepped back a couple of times and got a bit shaky the second and third time because it’s like having someone say Boo! behind you. Didn’t like that feeling.
I’m to see her again in a few months. I’m to see a neuro PT to help figure out what exercise will work for me but need to discuss my problems with my GP about this because he knows my history of exercise and pain.
The next day my company said they’re cancelling my benefits and so now I can’t afford a neuro PT. Great.
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