sdsyd
Distinguished member
- Joined
- May 22, 2008
- Messages
- 329
- Country
- US
- State
- sd
- City
- piedmont
Hi everyone. I have been trying to wait until I know something more definitive to post again, but decided to go ahead and post. To make a long story short- my symptoms have begun progressing quite quickly since our return from Mayo clinic. Since then- my (R) hand has become involved and the left leg has worsened. Cramping has become quite a problem and my ability to function at work and home is greatly reduced. I went back to the Dr. last Thursday and she took a look at the atrophy and weakness and has made a decision that it is NOT realted to the B-12 deficiency. I think she was quite shocked. Based upon all of this, plus all of the tests I have undergone she feels certain it is either MG or ALS. I went and had a full MG panel as well as some other immuno specific labs and will hear the results sometime this week, as they have to be sent away. I began baclofen at 5 mg 2x daily and it is helping with the cramps already- thankfully. My neck is extremely sore and was warned that baclofen could destroy some of the tone I was utilizing for my "good", but am going to keep on it until they get the dose titrated correctly.
I plan to still work until I know something more, as MG is highly treatable, and my team leader at work is supportive and says we will just take it a day at a time and let me know that I don't need to hide it anymore as they could "surmise" by watching me struggle the last couple of weeks that things weren't going well. I have bruises on my legs from running into things at work, because I have to try and keep a high pace up and now have alot of difficulty moving fast and then trying to slow, stop or turn mid movement. Our therapy gym is very crowded with patients, wheelchairs and equipment and you need to be able to be pretty swift to move among all of this.
I have only shared this new update with a few people as I hate having people worry, and hate admitting I can't do something, but I consider many of you folks here my friends. I have wanted to reply to many of your posts, but I have been in "hiding" on the boards due to the fact that I don't want people with anxiety issues to feel they have been misdiagnosed, but in my specific case- for whatever the reasons-the neuro at Mayo wasn't all that concerned with my symptoms, especially since my EMG was within normal limits. She shared that this sometimes does happen. I will follow up wtih my neuro and gp once these test results come in and go from there.
I feel sort of like I am grieving right now, but Dan and I are also relieved to finally be getting closer to answers.
Thank you for listening once again and sorry I didn't keep it short like I said.
Cindy
I plan to still work until I know something more, as MG is highly treatable, and my team leader at work is supportive and says we will just take it a day at a time and let me know that I don't need to hide it anymore as they could "surmise" by watching me struggle the last couple of weeks that things weren't going well. I have bruises on my legs from running into things at work, because I have to try and keep a high pace up and now have alot of difficulty moving fast and then trying to slow, stop or turn mid movement. Our therapy gym is very crowded with patients, wheelchairs and equipment and you need to be able to be pretty swift to move among all of this.
I have only shared this new update with a few people as I hate having people worry, and hate admitting I can't do something, but I consider many of you folks here my friends. I have wanted to reply to many of your posts, but I have been in "hiding" on the boards due to the fact that I don't want people with anxiety issues to feel they have been misdiagnosed, but in my specific case- for whatever the reasons-the neuro at Mayo wasn't all that concerned with my symptoms, especially since my EMG was within normal limits. She shared that this sometimes does happen. I will follow up wtih my neuro and gp once these test results come in and go from there.
I feel sort of like I am grieving right now, but Dan and I are also relieved to finally be getting closer to answers.
Thank you for listening once again and sorry I didn't keep it short like I said.
Cindy
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