Recent content by staugie

Thank you. I really appreciate the reply. Yes, I was wondering if the fasticulations the EMG picked up in my legs counted as something. The latest doc also found a decreased gag reflex and some strange reflex/clonus in my right foot. I'm just really confused at this point. I will review the El...

I guess I should say it wasn't necessarily totally "clean," as they always pick up the CMT weakness and did pick up fasticulations in my legs once.

Hi All, I was here awhile back, but still have questions I am hoping you can help me with. Can you have respiratory onset with a clean EMG? What part of the body is tested for that? I have CMT1A, but have unexplained expiratory muscle weakness. The muscles are only at 40%. My CMT neuro...

Thanks, Nikki. They did the EMG right on my leg, bicep and paraspinals after my last post, and again said nothing but CMT1A in my leg and hands. The doctor then said, though, that he has no idea what would be causing my chest muscle weakness. He said did not feel comfortable doing anything on my...

Hi Mike, thanks so much for the check-in. I guess my question for you or for others that come along is would it be prudent to ask for an EMG that tests the chin and tongue (or other bulbar places) or would that be redundant considering I've had my limbs and paraspinal muscles checked?

Hi All, This is still open, so I am replying here with more questions as I feel things are still evolving and scaring me more and more. I hope someone sees this and can help! My three biggest new concerns are: 1. I had a follow-up with my Pulomonolgist yesterday. My FVC has dropped to 85%...

Ok, that is great to know. I will check it. Thank you!

Thanks, Laurie. I actually had one in October. I was fine as long as I wasn't supine. My concern is that in Oct my FVC was 96%, then 92% in Dec and 90% in Jan. I feel like it's worse now, but I'm going to avoid knowing that number for as long as possible! Plus, I was able to get away with not...

I am not sure that worked, but I'll give you some of the main numbers: FVC - 90% FEV1 - 83% TLC - 91% VC - 92% DLCO - 75% DLCO/VA - 92% PI MAX - 143% PE MAX - 36% I've had three tests and they are all pretty similar. This is from January. I am not sure if this helps or if there are other...

Thank you all very much for the prompt reply. I was trying to reply last night, but I couldn't figure how the heck to post the PFT and wound up deleting this three times, haha. Thanks for the sympathy on the diagnosis. I am so sick of doctor visits! Mike, I was banking on anxiety until this...

Hi There, I have to start by saying how wonderful all of you and this site are. Your giving of such important personal information is really amazing and so helpful. I am scared to go here, but could this be some sort of thoracic onset? I am a 39 year old woman. Does that happen? My symptoms...