What Was Your Experience During the Tensilon Test?

[vickinok]

What was your experience during the Tensilon test?

My son was asked to perform different strength tests, ie: stand on toes, squat, stand on one foot, etc. Then he was given the initial injection with no reaction.

Next he was given the full injection and immediately began sweating, tearing, and afterwards said his heart felt like it was going to pound out of his chest. During this, the doctor was asking him to perform the strength tests again, which I interrupted and told the doctor that obviously he is unable to and made my son lay on the bed. All this occurred within 30 seconds to 1 1/2 minutes.

When my son was lying down, I kept asking him to squeeze my fingers, just for my peace of mind that he was congnizant of his surroundings. During this, one of the times, he squeezed so hard, it felt like he would break my fingers. Mind you, prior to all this, he would bear down and try to squeeze my fingers and it felt like the strength of a small child (he was a well built 15 year old at that time). His lying in the bed lasted maybe another minute when he jumped (yes jumped) out of the bed and performed all the tests perfectly that the doctor had previously asked him to do.

This entire episode lasted around 3-5 minutes, from the initial injection, to his performing the tests, then once again being as weak as before.

The Neuro at the time stated that this was a negative response....

So, I'm just curious if anyone else experienced similar responses.

[lilviking]

Did you tell the neurologist about when he squeezed your hand? I am not sure why the neurologist would say that it was a negative response, but the effects he felt in the first 30 seconds or so is not unusual. They actually keep a second syringe nearby that will quickly stop the effect of the Tensilon. It usually only takes about ten minutes from injection to recovery. After that you are back to normal and can go home.

When I had the test I felt a got warm and felt like my heart sped up and one eyelid began to flutter uncontrollably. Within about 90 seconds my legs felt stronger and lighter. I was not asked to do any kind of exercises and my strength and stability was limited. You should not have to do anything more than lift you arms or legs to tell if the Tensilon had an effect. The strength left shortly after and I got dressed and left after about ten minutes. I had a positive test result.

[vickinok]

Yes we did! But as you can imagine, this crackpot stated that it was still negative. As a matter of fact, my husband was coming unglued with the doctor at that point and was having a few words.

Some Neurologists love the term 'subjective'. Since my son did not have the obvious ptosis, his response to the Tensilon was based on strength both before and after. Very subjective don't you know.

We have been fighting the anxiety/depression/stress diagnosis since day one. It has followed us from Texas to Minnesota to Missouri. His current Neuro and other specialists outside of neurology are the only ones that believe his problem is a physical one (including a highly recommended Psychiatrist that my son saw for 10 months and concluded his problems were physical, not emotional, etc).

[lilviking]

That is a big problem with Myasthenia Gravis. It is still considered rare, affecting between 0.5 and 14 in 100,000 mainly females between 20-30 and males over 50. Of all the autoimmune disorders, MG is the most understood yet they say it is likely under-diagnosed. One of the reasons is that even if the tests are negative a person can still have MG. A diagnosis is still quite subjective and generalized. If Myasthenia is suspected some neurologist will prescribe Mestinon for a short time to see if a patient reacts positively.

It is still important to continue to try to rule out other neurological and/or autoimmune disorders. After ruling out Lyme Disease my GP was the first to mention the likelihood of an autoimmune disorder such as MS. My neurosurgeon added ALS as a possibility. My neurologist immediately ruled out ALS and noticed a problem with one of my eyes that I never realized existed. Now when I look at older pictures I can see that my left eye is always slightly closed. Before he sent me for the Tensilon test he told me that a negative test would not totally rule out MG.

Don't give in and don't give up. Your son is a young male and like myself (being a male well under 50) does not fall into the cookie cutter group. It is not fun to repeatedly go through EMG/NVS, MRIs, CT scans, and blood test after blood test, but it is worth it if it means improving his quality of life. If they ruled out MG then have them keep looking until they find out what it is.

Good luck and tell him to hang in there. Even if he has Myasthenia Gravis he can go into remission and not ever have relapse.

[loisba]

I was given a Tensilon test back in the mid 70's by an MG specialist. Like your son, I was given 2 injections. The first produced no results, and I was later told that it was actually a placebo. The 2nd one, which they had told me would be stronger if the first produced no results, turned out to be the real Tensilon. The placebo is given first, I think, to weed out hypochondriacs.
As soon as I was given the Tensilon, I experienced a rush of warmth over my body, I began to sweat and turned red. The intern watching reported to the doctor that it was a positive result. I probably also had some ptosis of the eyelids which cleared briefly, since he was in no doubt that it was a positive reaction.
After the positive Tensilon, the doctor then did a series of strength tests, using equipment that graphed the increasing fatigue of the muscles.
I wonder if your neuro got his feelings hurt by you interrupting the test, and decided to take it out on you by declaring a negative result. Neuros in general seem to have such huge egos, poor things. Their egos often seem to get in the way of their brains when it comes to diagnosing an MG patient. :D
Hugs,

[vickinok]

:D :D :D
Thank you Lois, I needed the laugh. Kinda makes you wonder if everyone except the Neuros themselves know they have BIG egos...NOT ALL NEUROS MIND YOU, I'M NOT SAYING THAT, just alot of them.

I spoke to my son and he said that his body felt hot also. This doctor did not use any machines for monitoring purpose. I and my husband had the uneasy feeling he had never performed a Tensilon prior to this or if he had, it had been fairly straight forward.

It's funny (in a sick sorta way :rolleyes: ) but we usually go home after these appts and rant and rave, then laugh ourselves silly. :D

[lilviking]

You do run across some "bobble-head" neuros out there (big head on a little body). :p I noticed that most of them seem to lack a sense of humor. My original bobble-head :rolleyes: looked at me crazy when I told him that I sometimes found watching my muscles spasms entertaining, painful but still entertaining. I got the same response from the one who gave me the Tensilon test when I joked that I felt "all warm and tingly". :D Even my wife laughed at that one.

I like to keep things light to help everybody relax. A little laughter can go a long way. :) One of the best doctors I had was a top notch neurosurgeon who noticed that I had exaggerated tendon reflexes when I almost kicked him off his stool. We laughed a lot. So, next time you get stressed or frustrated with the neurologists just think of them as little bobble-heads stuck to the dashboard on a bumpy road.
:D

[glenmeadow]

That's funny! I had one neurologist in a little bow tie; the ones who like to hide behind the equipment, hate yardwork and interpersonal communication, and only do EMGs etc. -- my Dad is a doctor so I can take shots at them. :) He warned me ahead of time what this character was likely to look like (never met him, 10 states apart) and darned if he wasn't SPOT ON. Hilarious. Anyway. I told him I was tapering off my antidepressants and he says "How are you doing that? It says here you are on 60mg tabs." "Yes, i said, but they are scored and I can bite it in half and make it a 30."

I swear he looked at me like he had just met a bear, a threatening meat eating carnivore in his very own office. "BITE?" he says, incredulously, "you mean like, with your TEETH?" Gasp.

I could tell he thought it was inappropriate patient interventionism; I should have come in for a PRESCRIPTION for the smaller tab, gotten permission in writing, and used a sterile pill cutter, I'm sure.

Ha.

[GodDreamer2007]

I was diagnosed through Tensilon.
My experience is a bit different than the others. First, although I'm not a neuro, it sounds as though your son had a positive reaction.

My neuro asked me to get up the morning of the test, and clean the my house from top to bottom, and then when I felt as though i couldn't do anymore, go out to the mall, and walk, and walk, and then meet her at the hospital.
Once at the hospital, i was put through the wringer...oye, almost did me in..
Now, I don't know if this was something my doctor wanted, or the hospital wanted, but I haven't heard of any body else having to go through this part.
Anyways, they hooked wires all over my legs, arms to measure the strength of them before injection and after. Due to a heart condition, I was also hooked to a heart monitor.
So, before injection, they made me do all kinds of excerise type stuff, wrote down the number, or rates, and then did the same after the tensilon injection.
I swear, i could feel it the minute it was injected. At first, my chest felt tight, and then it was as if this warmth spread over me, and whereever the warmth spread over my chest it was as if all Airways were opened at full throttle. I wasn't even aware that I was having problems with breathing. I started to cry. I knew what this meant. I knew that if the breathing musles were involved, it could be very dangerous for me.
My neuro wasn't the only neuro in the room. There was a neuro from another neurology group who had not witnessed a Tensilon test before. And then there was two neuro interns, and the hospitals Neuro. Anyways, they all agreed it was a possitive response. My eldest daugher was also present. She is also on her way to becoming a doctor. Pyschologist. She was premitted to be there, and she knew immediately. She said my arms were immediately
straight and strong.
I left the hospital with Prednisone. It would be many many months before they introduced Mestinon.
How does your son describe how he felt during the test?
Also, if the neuro didn't think it was MG, why did he prescribe Mestinon?
Oh, and from everything I've read, and was told, Most Neuro's don't like to give the MG
diagnosis until it's black and white to all. Mostly because of the dangerous drugs we have to be prescribe, and what they do to our bodies. Once starting down that road, its a very long road back. And of course the ole' fear of law suits.
If you have any other questions, please feel free to ask..
best wishes
and welcome:)