[teresakoch]

I'm scheduled for a Tensilon test on Thursday morning - what can I expect?

Also, my doctor has me on a trial of Mestinon in the afternoon, which is when my right eyelid gets really droopy (my bloodwork was negative, but I still am having symptoms). When I took 30mg, I couldn't tell a difference; at 60mg, there was a negligible difference; with 90mg, I felt pretty good for a few hours, and I could feel the eyelid muscles tightening up, and it seemed as if I could see better out of that eye (although the outward appearance of my eyelid was very slight); and when I took 120mg, I could tell that I had gotten too much, as I felt nauseous and I started salivating.

Hubs and I went to the movies last night, and I could tell that the medicine (90mg) was helping, because I didn't feel like my upper eyelid was dropping into my field of vision. I took it at 3:30 p.m., but it usually takes between 60-90 minutes for me to start feeling the effects. I realized at the end of the movie that I hadn't felt bad or felt my eye drooping the entire time. However, when the medicine starts wearing off, I can REALLY tell just how much it has helped - I didn't realize that my muscles were so weak!

Is this an indication that I am looking at MG? I only had one value of the SFEMG come back slightly high, but it was in my arm muscle. My understanding is that if a person doesn't have MG, this medication will make them feel ill at any dosage....

Thanks for any insight - I really appreciate everything I can find out!

[jana]

I haven't had Tensilon. I think it is commonly used for droopy eyelids -- if you do have MG, it should make your eyelid pop right on up!!

[AnnieB3]

Teresa, Well, 120 mg. is often not prescribed for MG patients, especially for the newly diagnosed. I'm not surprised you had overdose symptoms. 100 mg. is often the max. Why? With a loss of receptors, too much acetylcholine can flood the neuromuscular junction. Does that make sense?

I'm surprised your neuro let you experiment like that.

I hate when doctors use words like "slightly" when they refer to tests done. The labs don't. They either say high or abnormal. Do you have your test results?

Tensilon is used only for the Tensilon test. It is a short-acting drug used to see if obvious weakness, such as ptosis, will improve. They will often do the test in a "double-blind" fashion, which means that both the doctor administering the test and the patient do not know if it is saline or Tensilon being given and when. They will often test your strength (i.e., neck muscles) before the drug is given, during the time the drug is in effect and after the drug wears off.

They can administer anywhere from 2 - 10 mg. of the drug. Side effects vary, including things like bradycardia. They often do the test in a hospital setting these days.

I hope the test goes well.

Annie

[teresakoch]

Annie,
The test was interesting - immediate "bad" feeling, but my eyelid went up. It's hard for the doc to assess me, because my eyelid isn't as bad as most of her patients' usually are (this was caught VERY early). However, she did say that since there was a definite change, and since I had a good response on the Mestinon, she is going to diagnose me with MG.

She is having me take the Mestinon (90mg) every 4-6 hours while awake, and see how it works. She also mentioned the possibility of taking the timed-release medication if I see improvement on a "consistent" dosage. I have been taking the Mestinon 3 times a day for the past 4-5 days, and it has definitely helped.

As far as the other test result, one of the SFEMG values was 3-4; the rest were 1-2. What that means exactly, I'm not sure; I'm assuming it is the number of "jumps" that were seen.

[AnnieB3]

Teresa, That's great! Not that you have MG but that a doctor saw the significance of the result.

Be careful with that high dose of Mestinon. It's better to work up to a high dose. Most docs will play with frequency first. But if you need it, you need it.

Those SFEMG numbers are odd. Usually they are something like 55 MCD (mean consecutive difference), normal being 35 (as an example only). Not sure if they are talking about abnormal pairs or what.

I think it's funny when docs refer to MG as "mild." Like "He's a murderer but only sometimes." My ptosis can go anywhere from mild to 3/4 closed. It all depends upon what I've done or if I've been out in the heat. Anyone with MG can potentially have eyelids completely closed, chest wall muscles that don't work and the need to be on a ventilator. Oy.

What a relief. I'm glad you have an answer and a good doctor. That's fantastic.

Annie

[teresakoch]

Well, I did "work" my way up to that dosage, per my doctor's instructions (see my first post in this thread). I've definitely felt the improvement in my eye muscles, as well as my other muscles (which I didn't realize were so affected!). I'm taking it 3-4 times a day while awake, as needed - which seems to be every 4 hours or so.

I'll be seeing my doctor again tomorrow to see where we go from here, and she did mention that we might want to try the timed-release dosage to see what happens. I don't know if she will want to do a thymectomy or not, but if she does, I'll be OK with that - it certainly sounds like it can help!

The EMG numbers appear to refer to something called "polyphasics" - 1-2+ is considered "normal", 3-4+ is considered "incr", whatever that means. The report says, "EMG of the right upper extremity demonstrated some increased polyphasics/was suggestive of minimal nerve root irritation in the C6 distribution".

I think I may be the one referring to this as "mild" MG - the doctor said that my eyelid isn't nearly as droopy as most people that she usually sees, so it has been hard for her to tell if anything is helping. It was really a fluke that this was caught when it was, but I am glad that I was able to find out about it before things got really bad. Of course, I know that this can get worse, but I'm just going to take it one day at a time and hope for the best.

I guess the good thing is that our family knows how to "deal" with an unexpected diagnosis - when our daughter was born 9 years ago, we certainly weren't expecting her to have Down syndrome (that's her picture by my name - taken by her oldest sister when she was 18 months old), and we didn't know what the future was going to hold. Now we know that we just have to take things as they come, and we will handle it just fine....