Is anyone still getting chemical challenges like tensilon or neostigmine injections? This is the one thing I havent had in front of the regular neuro. When I was admitted in July of 08 for what was thought to be a myasthenic crisis the general neuro ordered the Tensilon and they had me all ready. But suddenly the word came there was none in the hosp!! What timing. I reacted so positively to the mestinon but that seems to have fallen by the wayside.

I was told in other places that tensilon is nolonger done and nolonger made. That shortages when this began to happen were what I ran into.

I am seeing the new neuro on the 9th. My daughter called and we found a mistake was made and we are not sched on Nov 2nd but the 9th. But I am seeing my pulmo Tues which is good.

Annie59

Annie, They have not discontinued Tensilon and, as far as I can tell, there is no shortage of it. The "trend" with neuros has been twofold. One, they are afraid of patients having adverse reactions to it and, therefore, getting sued. Two, if it isn't done "double blind," then the results are often called into question, even if improvement of ptosis is immediate and obvious.

Certain neurologists don't do the Tensilon test. I'm not sure of any in MN who do.

I have had two tensilon tests. As Annie b3, said there is no shortage of the drug, its just that a lot of hospitals dont carry this in their pharmacies as there isn't a great demand for it.

When I had my last tensilon test the drug had to be ordered in for me as the last time the hospital did the test on anyone was ten years ago.

Many countries in Europe have banned the tensilon test, due to the problems it can cause to the heart - stopping it - bit of an issue if you ask me. If a tensilon test is carried out a crash cart should be next to the patients bed and that is standard protocol. Unfortunately they didn't bother with that on my first test - muppets. Nothing happened but I was very anxious as I knew that it should have been present.

If you google Tensilon test you will find heaps of info on it.

Rach

I know that my first neurologist called the test a Tensilon test when I had it- there were like 4 doctors there watching me when I got it done- but my new neuro at Northwestern Hospital is saying that they have actually stopped making it and when you hear a neuro calling something a Tensilon test its actually Neostigmine but u know how doctors handle change....considering most of my doctors still use paper for everything...not good.

Annie,
I've had two Tensilon tests. The first one had to be scheduled at a hospital and the pharmacy had to order the medication in advance. I think the brand name they used was Enlon (Edrophonium Injection).

I had a second Tensilon test completed by a neuro-ophthalmologist, who seemd a bit more skilled at administering the test. They were able to objectively measure an improvement in my eye muscle movements, for a brief period of time, after receiving the medication.

I'm not sure how often this test is used for other possible myasthenic weakness. Hope this helps.

Cate

Maybe they'll start calling it the "Enlon Test."

http://www.drugs.com/mtm/enlon.html

http://www.bionichepharmausa.com/products/

Edrophonium Chloride is still available as an injection.

AnnieB3, Just rereading your message. My lung doc said Tuesday that he has another patient in ICU he wants to do the test on and it does need to be a double blind he added which is great by me as the last challenge and even the mestinon has been ignored for this very reason. I mean an assumption of the placebo affect or the like. I welcome it. He said he was gonna check with the pharmacy so I hope they cooperate. This would be a great piece of evidence.

Annie59

Interesting brandon. This is what I was told in another MG group in late 08 I think it was when I was discussing that the pharmacy was out at the big teaching hosp I go to and I was surprised. They said it was being phased out and would nolonger be made. But this was back in 08 and I havent talked about it till this post.

I did get get the neostigmine as the challenge in the neuro optho department in July. It worked amazingly but there was no double blind and 3 docs were working on me. The senior doc was so swamped I didnt get a chance to tell her that they didnt test me the same way after. She was out of the room and the 2nd test was done in another dept. It was very disorganized. But it great for my vision. But they didnt test my body of course. I told my lung doc how amazingly the injection worked for me. He wanted to know how they gave it to me asking if by IV. I had it in my behind as a shot.

Thank you all. You all gave me exactly what I needed. I am very encouraged my lung guy will the the drug and use it Tuesday. Of course I have some hope my disease can be diagnosed will enough with the new developements from this week and what happens Tuesday next to avoid the biopsy.

Annie59