Hi Rach! Welcome back! I do recall your posts and contributions from years past.

It's amazing to me how long it takes some of us to get the diagnosis. I hope you find some answers soon. I am also sero-negative and EMG negative (tho 1 EMG was questionable, instead of negative, when ready by a Mayo doc).

Have you had a tensilon test performed? In addition to a positive response to Mestinon, this is what really sealed the diagnosis for me. It was such an easy test to perform and they were able to objectively measure my eye deviation before and after the tensilon injection. I was surprised that this test wasn't performed during my first 7 years of symptoms.

I'm hoping your appointment on the 16th goes well. Do let us know the outcome.

Cate

Hiya,

I've had two tension tests one positive - ptosis resolved for a few minutes but the neuro said it wasn't long enough.

The second tension test was negative.

Did you know the tension test is banned in many countries, due to the use of atropine? Both times I've had the test administered they've had a crash team on standby.

Thanks
Rach x

I also had a strongly positive tensilon test to confirm diagnosis. My Emg was was questionable as well but I had only been off mestinon 12 hours before. A SFEMG was not done as my neuro said it was not needed. I am seroneg so far. Hoping to have a MUsk antibody test soon if my insurance will pay for it.
Sandy

Valeant Pharmaceuticals (purchased by ICN) quit manufacturing Tensilon, roughly, 3 or 4 years ago, or more. It's my understanding that some hospitals still have a few vials left. Tensilon was administered here, only in hospital.

Some of you may not be aware of this but with respect to the Tensilon test, patients were given a placebo, along with Tensilon. In this way, they could get objective results.

Atropine remains a very valuable drug, for one, in cholinergic crises...if they can figure out that it is in fact, cholinergic! That can get iffy.

When I had the tension test the first time they gave me atropine first then tensilon. M

The second one was done so that only the Dr that drew up the drugs knew what was contained in the syringes.

They did three one saline, one atropine and one tensilon.

My blood pressure and pulse were very low 80/50 and pulse 54. When given saline there was no reaction, when I was then given atropine my pulse accelerated to 140 BPM, and my eye opened. When I had then tensilon nothing happened, I was still feeling dreadfully I'll after the atropine!

However as I have a home blood pressure machine I know that a low bp doesn't cause my ptosis as I've measured my bp when it happens and its normal (low but normal) nine out of ten times.

Plus in 2007 I had ptosis solidly for 9 months ( I then started on mestinon) I couldn't have worked full time, delivered a litter of 9 puppies etc etc with a dramatically low bp without passing out constantly. Something I didn't do!

The last tension test I had was the first that hospital had performed in over 10 years.

Rach x

Hi Rachel,
Welcome back, I´m glad to hear of you but sorry for your condition which is giving you again some problems...
Neurological disorders are effectively giving some hard times to doctors whatever their specialty is!
I´m still around too, waiting for better time, with my Pred at 7 mg/d, 5 x 60 Mestinon daily and one PLEX every 7 weeks (next target 8 weeks...).
I quit Cellcept 18 months ago without any problem due to lack of effect.
Last month we took a week cruse from Venice to Athens for our 50th wedding anniversary and I was able to cope with all the sightseeing challenges but climbing to the top of the Acropolis in the heat was quite rewarding.
I wish you the best,
Maurice.

Fantastic...and congratulations on both counts.

And the celebration goes on, this week-end we have the canadian part of the family from Montreal (son, wife and 3 grand children) by us. They combined a wedding in Normandy in the step family to come all 5. Great!!!
Maurice.

...Maurice...Yours are experiences of a life time...! I know you will enjoy every moment!

Appointment today was a disaster.

Basically accused of putting on my ptosis and facial droop and all my eye problems. So upset.