Hi My name is Danielle and i know it was last year that you wrote this blog but i was wondering if you can help me. My daughter who is 14years old has been experiencing the same symptoms that you describe. Unfortunately it has got so bad she now has a feeding tube and often needs to use a wheel chair to move around. She also has a nodule on right side of thyroid too that has not as yet been removed.
Reading your post i am wondering if you have any more answers to your condition or if you have found out anything that may help with your symptoms. My daughter is using a drug called mestinon which is the only thing that has given a bit of relief. I would really appreciate it if you could email me and give me an update on your progress.
I hope you are doing well and look forward to hearing from you.
Danielle
Quote:
Originally Posted by whitechinacat
Well, the new neurologist had a cancellation today so I got to see him right away. 
It was a good appointment. I am used to walking away from appointments with my family doctor or rheumatologist feeling that I've learned nothing and have no plan for moving forward. It's frustrating to say the least. The neurologist listened to my history and did a neuro exam. The only abnormality there is that my knee reflexes are quite uneven, but he said he wasn't sure why. He said that my story is quite complex and he can't think of any particular neurological disease that would account for my symptoms, but he is willing to investigate and try to help me feel better. That's a wonderful thing to hear! He admitted that it would be sort of a fishing expedition, but he was willing to cast a wide net and see what he could find.
I am having my MRI of brain and spine repeated (it's been a year) to see if there have been any changes. Depending what it looks like he may also redo the NCV/EMG at a later point. He also wants me to do a sleep study and to wear a holter monitor (because of the palpitations/fainting).
I am going to try Lyrica as well starting at 75 mg at bedtime and then 75mg twice a day. I am quite interested to see if it will make a difference.
I'm just relieved to have some direction here. |