OregonGirl
Member
- Joined
- Nov 3, 2015
- Messages
- 13
- Reason
- Other
- Country
- US
- State
- Oregon
- City
- Somewhere
Greeting all! Just a quick post as I need some support.
I posted last fall regarding my symptoms and test results.....
https://www.alsforums.com/forum/do-i-have-als-als/30480-insight-appreciated.html
Sine then I have found a neurologist I really really like. Saw him December 1 and he said " I would not even put you in the possible ALS category". He scheduled a follow up February 19th.
Right after my appointment the pain I am experiencing in legs and left hand started to spread to arms and a slight bit to my right hand. It now consists of cramping as well as sharp pains and the dull aches that have been here since the start of all of this. The twitches are spreading too.
Being the truly caring doc he is, he fit me in for an appt January 13th. At the appt all the office tests again - strength, Babinskis, Hoffmans etc. except for brisk bi-lateral reflexes - were normal. He then did acknowledge the muscle loss in my left hand thenar area. It have been watching my hand get smaller for months. He told me not to worry, that he would let me know when to worry (easier said than done).
He ordered a spinal tap and a total body Evoked Sensory Potential test that were done two days later - all test came back normal. When his assistant called to tell me the "great news" I thanked her, hung up the phone and lost it, I mean uncontrollable sobbing and the overwhelming sense of just wanting to just die now. People - even my own family - just don't get to - how can I be sad about normal tests......but you all know how that relates to ALS.
He set up more EMG testing for Feb 15th. This will be 7 months post foot drop (that did get better BTW) after my shoulder surgery July 13th with the twitching that started about August 1st.
I am a mental mess and can hardly keep it together. My husband was scheduled to go back to work (he took a job 3 hours away 8/14) first week of February but was granted another "detail" to keep him at home - thank god. We are struggling with what to do after this detail is very if I still have no diagnosis and continue to get worse. Live in VERY small area and job opportunities are few an far between.
Anyway I know no one here can give me a diagnosis and I really am trying not to bother anyone who is diagnosed or has a loved one affected by ALS/PLS etc. I am just as such a loss. Thanks
I posted last fall regarding my symptoms and test results.....
https://www.alsforums.com/forum/do-i-have-als-als/30480-insight-appreciated.html
Sine then I have found a neurologist I really really like. Saw him December 1 and he said " I would not even put you in the possible ALS category". He scheduled a follow up February 19th.
Right after my appointment the pain I am experiencing in legs and left hand started to spread to arms and a slight bit to my right hand. It now consists of cramping as well as sharp pains and the dull aches that have been here since the start of all of this. The twitches are spreading too.
Being the truly caring doc he is, he fit me in for an appt January 13th. At the appt all the office tests again - strength, Babinskis, Hoffmans etc. except for brisk bi-lateral reflexes - were normal. He then did acknowledge the muscle loss in my left hand thenar area. It have been watching my hand get smaller for months. He told me not to worry, that he would let me know when to worry (easier said than done).
He ordered a spinal tap and a total body Evoked Sensory Potential test that were done two days later - all test came back normal. When his assistant called to tell me the "great news" I thanked her, hung up the phone and lost it, I mean uncontrollable sobbing and the overwhelming sense of just wanting to just die now. People - even my own family - just don't get to - how can I be sad about normal tests......but you all know how that relates to ALS.
He set up more EMG testing for Feb 15th. This will be 7 months post foot drop (that did get better BTW) after my shoulder surgery July 13th with the twitching that started about August 1st.
I am a mental mess and can hardly keep it together. My husband was scheduled to go back to work (he took a job 3 hours away 8/14) first week of February but was granted another "detail" to keep him at home - thank god. We are struggling with what to do after this detail is very if I still have no diagnosis and continue to get worse. Live in VERY small area and job opportunities are few an far between.
Anyway I know no one here can give me a diagnosis and I really am trying not to bother anyone who is diagnosed or has a loved one affected by ALS/PLS etc. I am just as such a loss. Thanks