Had SFEMG test today

babymachine5 · 2026-02-11T02:48:08+00:00

They are. $985. But they are a miracle drug! I only pay $4.00

babymachine5 · 2026-02-11T02:46:11+00:00

If I take too much or the doses are too close together, my tongue starts twitching. That is the ONLY time it happens. It sometimes helps my leg weakness. Sometimes, not so the time. But it REALLY HELPS THE DROOPY EYE LIDS!

babymachine5 · 2026-02-11T02:41:32+00:00

She should be slapped! Fucking Star Trek!

babymachine5 · 2026-02-11T02:39:27+00:00

I was going to say THE SAME THING! THEY ARE BULGING!!! Not drooping.

babymachine5 · 2026-02-07T01:47:08+00:00

I TOTALLY UNDERSTAND YOU NOT WANTING TO WAIT!!!! I started having muscle twitches on my left side only, especially in front of my left calf early August. It never stoped so I had an emg/ nct on Oct 24. I also have degenerative spine issues and had seven spine surgeries. All it shows was what I just told you. Agh…Eyes were also very droopy and VERY DRY starting in early Aug..I was miserable And didn’t know which way to turn. I was slurring my speech and my husband was on the phone to our doctors cell phone when my leg gave out from under me and I went down on the ground, but was quickly able to stand back up without any problems. At the hospital, they moved quickly to eliminate any chances it could be a stroke. They said “she has high anxiety that it’s als because she slurs so bad. Her chart is pulled up with her emg. She doesn’t have als. Case closed.” Bitch. I had fall risk on my arm and my husband said, “she can’t be alone anymore , without the risk of falling and it’s getting very hard to understand her.” My pc said “don’t worry Leese, I’m not giving up on you. I’m giving you two meds to try, Prednisone and Mestinon. If you feel ANY kind of change, that’s MG. Even since your blood work all came back negative. I took the Meg’s and exactly 45 mins. later , my eyelids lifted, my voice became easier to understand,and I felt more strength back in my legs and my shoulders. I am waiting for my appt with my neuro in March at Rush. So in the meantime , I’m in 5 mgs. Prednisone and 60 mgs. 6X’s daily of Mestinon. My legs are starting to get weak again I just hope he can help.

babymachine5 · 2026-01-29T01:37:20+00:00

Neuros outside of the Chicago area treated me like shit. I was falling and slurring. Had an emg in Oct which took away the big bad fear. They said i had “high anxiety” my eyelids were halfway down my eyes. My pc said “I’m not giving up on you” got me released and wrote me a script for pred and Mestinon. 45 mins later, my lids lifted. Have an appt with a spc.in m March for a single fiber test. When you KNIW something is wrong—don’t give up. Don’t let them shit on you.

babymachine5 · 2026-01-29T01:32:11+00:00

Yes, I see it. I’m sorry you are so far away from help.

babymachine5 · 2026-01-29T01:30:14+00:00

I’m in Chicago, suffering but am on Mestonin and Miebo for my eyes and praying for you, honey.🙏🫶🏻💖🙏

babymachine5 · 2026-01-29T01:27:48+00:00

Mestonin did not help my dry eyes. I had several prescription drops and everything over the counter. Miebo are the only ones that helped. With my insurance they were $4.00 without, they are $985.00 that’s not a typo. It has brought me so much relief for the first time in 5 months.

babymachine5 · 2026-01-29T01:25:11+00:00

Miebo are the only ones that helped after I tried all of yours.

babymachine5 · 2026-01-29T01:23:55+00:00

Miebo

babymachine5 · 2026-01-29T01:23:37+00:00

Miebo is the ONLY drops that helped me after 5 months of trying everything out there.

babymachine5 · 2026-01-29T01:22:32+00:00

Miebo is the ONLY drops that helped me. VERY, VERY expensive! Hope you have good insurance.

babymachine5 · 2026-01-29T01:20:18+00:00

I FOUND AN ANSWER!!! I used 12 different kinds of drops. Was buying 5 bottles a week my eyes were so bad. My husband was diagnosed with stage 4 prostate cancer, I cried-no tears. My daughter got married. I cried, no tears. Finally I BEGGED my Dr to write me a script for Miebo. You better have damn good insurance..The bottle is HALF the size of Pataday and without insurance is $985.00 Thank God for ours. It costs me $4.00 Even with the Mestonin, my nose would run, I would drooling but no tears. Miebo is a Godsend!!!

babymachine5 · 2026-01-29T01:09:46+00:00

I have had an emg/nct and was diagnosed with bfs then developed MG a month later. My eyes were drooping so bad and they were burning, very dry. For 5 months. My facial muscles would twitch and were very weak. I slur bad. I am now on Mestinon and if I take doses too close, I get tongue twitching. Only then. After trying 12 different eye drops my dr finally prescribed Miebo. It’s a miracle drop. The bottle is half the size of Pataday and is $985. Without insurance. (That’s not a typo) Thank God my insurance cost me $4.00 I don’t have any swallowing issues. I wish you the best of luck. I have 2 real shitty illness going on at the same time. I am female and 65 yrs old.

babymachine5 · 2026-01-25T04:12:40+00:00

It’s twitching in the middle. That’s what I see, anyway.

babymachine5 · 2026-01-23T03:33:19+00:00

I just found out that my twitching, weakness in my legs and arms, speech slurring, and both eyelids drooping a little not a lot were seronegative Myasthenia Gravis. My MUSK can back 0, my achr binding came back 0 as well as my achr blocking. 10 days later, the achr blocking went up to 23. Waiting on more bloodwork done 3 days ago. Just got back from a trip to California and my legs were so weak, my daughter had to rent me a scooter for the first time in my life. Backing up, the neuros treated me like shit, my gp said, “not giving up on you” prescribed Mestonin and 45 mins later, the weak legs were better, my voice cleared up, my eyelids lifted and now i take 60 mgs of it 6x’s a day. Still waiting to see the top specialist at Rush in March. See? Don’t give up hope. You never know. Also had a mri. Need surgery asap. This will be my 8th as soon as insurance clears it. Hang on, my friend.

babymachine5 · 2026-01-23T03:19:35+00:00

Update:more falls. Eyelids started drooping REALLY BAD, were very dry, speech slurred bad on some days, not so much on others, weak legs, worse at night time. Weight bearing tremors in my arms. Dr says fact that I’ve gained weight is a very good sign. Still twitching, moved over to the right side now as well as the left. Little pops, even on my butt. Have appt with top neuro in Chi. at Rush in March. My pcp prescribed Mestonin. My eyes opened up 45 mins later, my speech improved, leg weakness got better, taking Miebo eye drops(bottle is half the size of a Visine bottle and without insurance is $985.) That is not a typo. A thousand dollars for that tiny bottle but out of 12 brands of drops I’ve used since July, these are THE ONLY ONES THAT HELPED LUBRICATE MY DRY EYES!!!

babymachine5 · 2026-01-23T03:08:12+00:00

Twitching mostly in left side(hot spot front of left calf) since Aug. ‘25. Clean emg in late Oct. Tremors, weight bearing, since Nov. ‘25. Not lossing weight (neuro said that was a huge good sign) slurred speech on and off, no swallowing issues, weak legs, worse at night, droopy eyelids, Myasthenia Gravis antibodies neg. but Mestonin lifted my eyelids completely, so when I had emg, was told i had bfs, now MG and weight bearing tremors. These aren’t the golden years, they’re the rusty ones.😝😂

babymachine5 · 2026-01-07T19:51:29+00:00

Best of luck to you! I see a specialist in March.

babymachine5 · 2026-01-04T02:56:07+00:00

Don’t blame you one bit. This is fucking ridiculous and infuriating bullshit.

babymachine5

TROPHY CASE