Anyone here take Mestinon before they were diagnosed?

shalynn · 06-26-2010, 08:04 PM

Abby,

I do think some of your symptoms sound like MG. The fatigable weakness especially. I think there is so much about medicine they don't know and not everyone is going to be affected with an illness the same way. It's good that the Mestinon helps you.

CMS sounds like it could be a possibility for me too. The doctors told my parents I might have Cerebral Palsy I had hypotonia and was developmentally delayed. This is what the doctor at Mayo has decided is my diagnosis....neuronal attrition having something to do with my delays

Who knows?? I just want to feel better.

Thanks for your input.

Shalynn

shalynn · 06-26-2010, 09:01 PM

Quote:

Originally Posted by teresakoch

The Tensilon test was done in the doctor's office - it was quite interesting.... The doctor did see a difference in my eyelid, but my eyelid droop is much less severe than what she normally sees. As I said, we caught this QUITE early in the game, and quite by accident (see my other posts for more info).

My "iffy" test was the EMG test - one of my muscles showed slightly increased jitter, but it was very slight. My doctor wasn't sure at that point if I had MG; it wasn't until I started a trial of Mestinon that we realized that I had it.

Thankfully, my doctor was willing to let me be aggressive in approaching this disease - be sure and find one who will work with you in that regard. You are the person who knows more about how you feel than anyone else, and doctors are human beings just like the rest of us. They generally know what they have been taught, but the good ones are willing to say, "I don't know everything there is to know, but I am willing to work with you to find out what is wrong with you".

If you want to do a trial of Mestinon, INSIST on being allowed to try it. If you don't have MG, you WILL NOT be able to handle even the smallest dose of it (15 or 30mg). I was able to tolerate 90mg, even though my blood test didn't show an AChR antibody. However, when I tried 120mg, I started feeling nauseous and I had excessive salivation. The medication is short-acting (4-6 hours), so it wore off fairly quickly. You can also take Imodium if you get too much Mestinon in your system.

A good doctor will be willing to let you try Mestinon, just to see what happens. If they hesitate, just tell them that you are willing to absolve them of all risk. It can't hurt to have that data point, and if it doesn't work, that is an indication that you need to look to something else as the cause of your symptoms. If it DOES work, then that is a pretty good indication that you have MG, and you and your doctor can go from there.

Did you have any side effects from the Tensilon test? The sound of it makes me nervous. It's good that your doctor was so willing to get you started on the medication. So many doctors feel that you have to have every single symptom or positive test in order to be diagnosed and treated with a disease.

So what happens if you take the Mestinon and don't have MG? Will it make you really sick?

I really wish I could find a neuro who would help me. I feel so alone in all of this. I guess I do have a neuro I like, but I'm afraid after my trip to Mayo she may just give up on me and go with what they said. I'm not disagreeing with my dx from them, I just think there is more going on.

You have given me a lot to think about in regards to advocating for myself.

Thanks a bunch for your help!

teresakoch · 06-27-2010, 10:27 AM

I didn't have long-term side effects from the Tensilon test, but I did have a mild reaction in the office due to the dosage. However, the test is done in such a way that the Tensilon is out of your body in a matter of a few minutes in the event that the dosage is too high (I felt better within a couple of minutes). It's a relatively safe test, and is done under a doctor's supervision, usually in the office.

If you take Mestinon and don't have MG, you will feel bad for a few hours at most - the medication wears off relatively quickly. Most doctors will have you start off at a very low dosage for that very reason. Believe me, you'll know if you've had too much!

Absolutely DO NOT be afraid to stand up for yourself when it comes to your medical health! If you do your research and present your arguments to your doctor, he/she should listen to you; if they aren't willing to "hear your case", then keep looking until you find a doctor that you have complete confidence in. That is SO very important with a disease like MG - you can't afford to wait until things get really bad with this condition.

If you have MG, and you aren't diagnosed early, you may find that you have more problems down the line. If your doctors don't know to look to MG as a possibility, they will just be spinning their wheels treating symptoms while never addressing the underlying condition that CAUSES the symptoms. If the underlying condition is dealt with, it can prevent other things from ever happening in the first place.

shalynn · 07-08-2010, 11:10 AM

I know this thread is a few weeks old, but I wasn't sure if I should start a new one or not. Anyway, I saw my eye doctor this morning and when I told her I was still having problems and described them to her, she felt that I should have already been started on a trial of Mestinon!! She said that most of the neuros in my area would handle it this way. She also went on to say that you can still have MG and have all of the tests come back negative.

So, she is referring me to another neuro who is new to the area and people seem to like (her words). I'm so hoping this will finally get me answers. I'm sort of worried because he is in the same group with another neuro I saw early on. That's been probably three or four years ago though and I only saw him once or twice. Still, I know some groups are funny about letting you see someone else in the same group.

I have been in a flare since last Friday. I'm still pretty weak, but it is worse late in the day. My breathing problems are worse when I exert myself. My sinuses are acting up, so I think that is making them worse. Yesterday after work (I only worked four hours), I came home and crashed for about two hours. I was just so, so tired and weak. I didn't even have the energy to talk or eat. I ate a bowl of cereal for lunch as that was easy to chew. Maybe I'll lose some weight afterall?

Everyone keep your fingers crossed and pray that I get in to see this doctor and that he is helpful.

Thanks again for all of your input.

suev · 07-08-2010, 12:39 PM

Sounds like your eye doctor is right on target! I would not worry about the referral - - just tell anyone who asks that this is who your eye doctor recommended...and you assumed that your eye doc and this neuro had an established working relationship!

Hope you can get in to see this new neuro really soon...and finally get some Mestinon to see if it helps you.

Good Luck and Keep us Posted!
Sue

teresakoch · 07-09-2010, 09:01 AM

Still, I know some groups are funny about letting you see someone else in the same group.

Honey, if you're the one paying for it, YOU are the one who gets to decide which doctor you want to see. If they have a problem with it, just tell them that you will take your healthcare business (and dollars) to someone who wants your money.....

I hope you get some answers soon - and I am one of those people who tested negative on everything (one "iffy" result, but not by much). A Mestinon trial is what clinched my diagnosis - it took 90mg to start seeing a difference. If you DON'T have MG, you won't be able to take ANY Mestinon without feeling sick!

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Anyone here take Mestinon before they were diagnosed?

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