flutebell
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- Every time I log in I see more new members. Hurray for those foiks sticking with the changes to support all the new people seeking help. I am currently not able to log back into neurotalk so I'll be hanging out here long term. That being said this...
- Hi everyone,I'm due for my fourth thyroid dose increase since I started on it 5 years ago. My muscle fatigue, breathing and swallowing are all worsening. I'm just over the TSH reference range but have lots of typical symptoms as well as MG-related...
- Last week I had two sets of respiratory testing. The first one on Monday was about 60 hours off mestinon. I started in a little booth with mouthpiece, nose plug and did various breaths in and out in different patterns. Then I had to get an electrode...
- Hi everyone,I've been in an "is it MG or not?" cycle for over a year. My sleep doc referred me to a research respirologist and I saw him today for the first time.What a wonderful appointment - a change from many I've had! He did a great history and...
- Hi everyone,My latest adventures in medicine include a referral to see the Arrhythmia Clinic docs next Monday. The last time I was there I was just starting Mestinon and feeling so much better.This time I've been having dizzy spells that accompany...
- I had my visit with a rheumatologist today. I had seen him for dryness (possible Sjogren's 5 years ago) and swollen painful ankles (caused by a bladder infection 4 years ago - he deemed it autoimmune).Today he said I didn't have lupus or Sjogren's....
- Hi everybody,I have been having trouble with words slurring in the cold car on the way to work this winter. When I saw the neuro a month ago and she discharged me as not having MG she said that wasn't typical of MG.I do get weaker in the heat but...
- Just back from my followup visit with the neurologist. Now that MuSK and LEMS are back and negative she says I don't have MG. She says muscle biopsy is too high risk and would likely be normal.She's never had a muscle biopsy show other than normal...
- Hi everyone,I'm heading to my neuro on Thursday (2 hours drive away) for "followup". This was after a 49 week wait for MuSK and LEMS antibodies coming back negative. AchR negative too and EMG and SFEMG also negative.I had a "Lazarus effect" when...
- I thought we might all need some levity at this time of year. I went to the outpatient Pulmonary Function Lab today for the scheduled pulmonary function tests. I had called ahead last week to see if I needed to stop my Mestinon - no need said the...
- I finally remembered to start this on a Wednesday :). Today I had to date stamp 170 10-13 page papers for work. I do the early ones when they arrive as my arm gets tired doing them all at the end of the day. I did much better than the last time I...
- After a year of craziness getting MuSK and LEMS tests lost, expired, wrong tests and finally negative results, today I am convinced that brain fog is rampant in the medical community.Last night I got a call to pick up a 5 night overnight oxygen...
- Hi everyone,I've been spending the last few weeks with an oxygen meter clipped to my finger while sleeping. I had a fancy rental model for 5 nights which showed the same as my overnight sleep study in the lab - a few episodes of oxygen dropping (4%...
- Finally, almost a year after the tests were ordered and as many possible screwups you could imagine, I found out today I am negative for MuSK and LEMS antibodies. The tests were done at Athena Labs and my neurologists office had to call them to ask...
- I had my post-sleep consult on Thursday. The report says I actually slept 4.5 hours of the 6 hours I was hooked to machines. It seemed like I was awake the whole time so was glad to get some data.Final conclusion is "Non-pathological (not clinically...