[winic1]

got sent for blood test and emg because of having right eye lid try to drop itself closed, and positive "ice test". along with lots of eye problems (muscle/control related) which could also be (and have been)attributed to other conditions. lots of physical weakness and problems that also could be other things (from fibro to leftovers from massive car accident).

Tests were negative. so doc says end of story. if it's not on paper, you don't have it. if you can't test for it and get it on paper, you don't have a problem. period. Great! except for the part where all the symptoms continue and there are no answers. However.....

Have been on an eye drop containing timolol for several years. pharmacy recently switched to a different generic, and noticed I was getting a burning red face shortly after using the eye drop every day. ophthalmologist said, stop using it and see if it changes (and have to go back in 3 weeks for eye pressure check to see if we need to continue/replace it). So, stopped eye drops containing timolol, which is on the MG hit-list.

Red face stopped, BUT SO DID THE DROPPING EYE LID AND SOME OF THE EYE MUSCLE PROBLEMS. In fact, eyes have not been this wide open in a while.

Sent message in to both ophthalmologist for the glaucoma, and ophthalmologist for the eye muscle thingies. No answer from either. (big surprise, unfortunately not.)

So....has this been just a side effect of the timolol eye drops, or did the eye drops exacerbate what really is MG despite negative test results? Do I pursue this, or just go in for my eye pressure check in another two weeks and simply work on finding another eye drop that is okay for me?

In a few weeks I have a regular check-in with cardiologist. Turns out one of the two meds she has me on is also on the MG hit-list--Verapamil. So do I need to tell her we should switch me off that one, too?

Since the blood test and emg were negative, I cannot think of a single doctor I have or know of in the area who will consider any of these things and help me figure this out. I am on my own, again. And eye problems limit my reading/internet to just minutes at a time, so researching on my own is pretty much impossible at this time, so hoping someone here can help provide info.

[ejh2]

I went the better part of two years barely able to walk . I had been to see a neurologist with a "wait and see attitude" . One sunday my appendix pops , I end up in the hospital and because of some unexplained respiratory problems , end up seeing a team of neurologists . The illness gets diagnosed as LEMS .
I am getting treatment and am doing better . Hopefully you won't have to go through anything that extreme . Hope you find your way to better days .
jim

Originally Posted by winic1

got sent for blood test and emg because of having right eye lid try to drop itself closed, and positive "ice test". along with lots of eye problems (muscle/control related) which could also be (and have been)attributed to other conditions. lots of physical weakness and problems that also could be other things (from fibro to leftovers from massive car accident).

Tests were negative. so doc says end of story. if it's not on paper, you don't have it. if you can't test for it and get it on paper, you don't have a problem. period. Great! except for the part where all the symptoms continue and there are no answers. However.....

Have been on an eye drop containing timolol for several years. pharmacy recently switched to a different generic, and noticed I was getting a burning red face shortly after using the eye drop every day. ophthalmologist said, stop using it and see if it changes (and have to go back in 3 weeks for eye pressure check to see if we need to continue/replace it). So, stopped eye drops containing timolol, which is on the MG hit-list.

Red face stopped, BUT SO DID THE DROPPING EYE LID AND SOME OF THE EYE MUSCLE PROBLEMS. In fact, eyes have not been this wide open in a while.

Sent message in to both ophthalmologist for the glaucoma, and ophthalmologist for the eye muscle thingies. No answer from either. (big surprise, unfortunately not.)

So....has this been just a side effect of the timolol eye drops, or did the eye drops exacerbate what really is MG despite negative test results? Do I pursue this, or just go in for my eye pressure check in another two weeks and simply work on finding another eye drop that is okay for me?

In a few weeks I have a regular check-in with cardiologist. Turns out one of the two meds she has me on is also on the MG hit-list--Verapamil. So do I need to tell her we should switch me off that one, too?

Since the blood test and emg were negative, I cannot think of a single doctor I have or know of in the area who will consider any of these things and help me figure this out. I am on my own, again. And eye problems limit my reading/internet to just minutes at a time, so researching on my own is pretty much impossible at this time, so hoping someone here can help provide info.

[winic1]

nobody is doing anything, so it is going to take something extreme before anything gets done about whatever this and the rest of it is. And while my current attitude and approach has truly become "oh well, whatever", there's this little nagging voice saying "but what about the kids", so I still keep wondering if there's something I can figure out so that I know where and whom to go to from here. Kids went through more than enough trauma with the car accident, they don't need to see mom hauled off in an ambulance because "the weird breathing thing" has finally become "the scary breathing thing" or "the not breathing thing" or something like that.

[AnnieB3]

I'm sorry that you still don't have answers. It's a hard place to be.

Don't make any drug changes without talking to your doctor! Not all MGers react to all the drugs that are relatively contraindicated for MG. The ones that we cannot take are Ketek and now Quinolones. Some would debate the Quinolones, however, the FDA did recently put a new warning on them for MGers.

http://www.fda.gov/Safety/MedWatch/S.../ucm247115.htm

At some point, you may have to take a trip to see a specialist. You can't keep going on this way. If you need help finding someone you can trust, ask people here for suggestions and tell them how far you'd be willing to travel.

As far as the breathing, have you seen a pulmonologist and had thorough breathing tests and/or arterial blood gases? If not, I highly recommend you do that right away.

I'm going to say something that may upset you. Quit blaming the doctors and try to work with them. If you go in with an attitude, you're just going to get an attitude right back. If you go in vulnerable, honest and needing their help, you may get a different reaction. Now, I don't know you or how things have gone. Pretty terribly from what you describe. But you need help and you are at the point of it being life-threatening from what you've said.

I hope you'll find someone to help you soon.

Annie

[winic1]

What specialist do I go see? I don't "have" anything!
Not on paper. No paper, no problem. period.

I don't have MG, says the paper. I have MG-like eye symptoms that went away when I stopped (on doctor's orders) a medicine that is on the MG no-no list. So is it the medicine or the MG I don't have?

So just what specialist do I go to for a problem they say I cannot have because the lab papers say no?

[schavarria]

Have you had a single-fiber EMG? I have seronegative MG, I tested negative for antibodies as well as a regular EMG. The single-fiber EMG, considered the "gold standard" for diagnosing MG, tested positive. A neurologist does this test, but you might have to travel to get to one who can do it. I went to the University of Illinois at Chicago, 2.5 hours away because local neurologists either don't have the machine or the ability for such a specific test. Best wishes to you.

Originally Posted by winic1

What specialist do I go see? I don't "have" anything!
Not on paper. No paper, no problem. period.

I don't have MG, says the paper. I have MG-like eye symptoms that went away when I stopped (on doctor's orders) a medicine that is on the MG no-no list. So is it the medicine or the MG I don't have?

So just what specialist do I go to for a problem they say I cannot have because the lab papers say no?

[winic1]

What is a single fiber EMG test like? I had the cattleprod type, and the stick, a tiny needle in type. Mostly in my neck this time, some in my arm. Sensors were on my arm, then up my neck & face.

Supposed to have gotten a copy of the reports, but of course, haven't shown up yet. Going to be actually in the same building on Wednesday, maybe I can get them to hand these over if I go in in person.

Going to call Yale for neurologists. New Haven is about an hour and a half away. Husband will have to take day off from work to get me there (he works in the opposite direction, so it will pretty much kill the day). Hoping they will recognize "transportation difficulties" and try to cram as much as possible in at once, and not pull the keep coming back for one step at a time routine, which will just mean I can't continue there. (Some places do, some don't.)

[schavarria]

What I recall is a small needle put in various parts of my arm, hand, and around my eye. She moved it around a lot under the skin, turning the needle in different directions, not just poking the needle and removing it. This was ordered for me after a regular EMG was negative. When I found out it the regular EMG was negative, I asked the doctor if it made a difference if it was the repetitive use of the muscle that made it weaker. He then did a repetitive nerve stimulation test right then, which suggested to him that it was myasthenia. That's when he referred me to Chicago for the SFEMG. That was the end of 2 years of looking for a diagnosis.

As for the travel, I made my first appointment, got up there for an initial exam and thought I was having the SFEMG. Because they didn't pay attention to where I was traveling from, they scheduled me on a day when the neuro didn't do SFEMGs, just regular appointments. I left there frustrated and crying! She felt bad but couldn't make room for the appt, because it can take over an hour for this test. So make sure they are aware that you have to travel a ways to get there so they can do everything at once.

Originally Posted by winic1

What is a single fiber EMG test like? I had the cattleprod type, and the stick, a tiny needle in type. Mostly in my neck this time, some in my arm. Sensors were on my arm, then up my neck & face.

Supposed to have gotten a copy of the reports, but of course, haven't shown up yet. Going to be actually in the same building on Wednesday, maybe I can get them to hand these over if I go in in person.

Going to call Yale for neurologists. New Haven is about an hour and a half away. Husband will have to take day off from work to get me there (he works in the opposite direction, so it will pretty much kill the day). Hoping they will recognize "transportation difficulties" and try to cram as much as possible in at once, and not pull the keep coming back for one step at a time routine, which will just mean I can't continue there. (Some places do, some don't.)

[Stellatum]

Yay for going to Yale! I was diagnosed in Boston after my Rhode Island neurologists couldn't diagnose me. When you call, explain you'll be traveling. When I explained that, they scheduled the SFEMG and the consult for the same afternoon for that reason.

A single-fiber EMG uses needles too, but they stay in for five or ten minutes once they're placed, and the doctor asks you to slightly clench a muscle and hold it like that.

I had two inconclusive single-fiber EMGs with one neurologist. He sent me to the Boston neurologist who did a third, and said it was conclusive. I am also seronegative (negative blood tests), so I was really happy to get diagnosed.

Send me a private message if you'd like the name of the doctor in Boston who diagnosed me.

Above all, don't give up. I really believe that more than anything, it's persistence that will get results.

Abby

[bu452000]

When I was diagnosed there was only one marker in the blood test that came up positive. Then the ice test was positive and my Dr. started me on a low dose of Mestinon with positive results. This is a tricky disease and it seems there are not a lot of knowledgable Dr. Find a good neurologist. I have been through three so keep searching till you find the right one. If your Dr. would let you try the Mestinon and it helps you might have your answer. Good luck.
Al