Anyone here take Mestinon before they were diagnosed?
 

I am tired of feeling so poorly. I just got out of the shower and I'm worn out. I washed my hair and that did me in. I get very tired and a weak jaw while eating. If I talk too much it wears me out. I could go on and on, but I'm guessing most of you can relate.

Anyway, I'm wondering if Mestinon is safe, or even prescribed for those who aren't diagnosed? I have had a work up, although it's not been nearly complete and nothing concrete can be found. My muscle biospy shows some atrophy and a few other non specific changes.

Also, can an Opthamologist prescribe Mestinon? My eye doctor is the one who thought I had MG in the first place due to my droopy eyelid and fatiguing eye muscles (she had me look upward and then watch my eye droop). She said that was a sign for MG. My eyelid gets real droopy by the end of the day.

I appreciate any help. Thanks in advance.

Hi, Shalynn. My neurologist started me on Mestinon as soon as he suspected I had MG. Later, a different neurologist, a specialist in MG, told me to keep taking it even though none of the tests show that I have MG. In fact, he won't have me start immunosuppressants because the tests are inconclusive and my main symptom is atypical. But he told me to keep taking the Mestinon. Mestinon is considered a safe and well tolerated drug (in comparison to the immunosuppressants, at least--I know that some people have stomach trouble with it, but I don't).

I hope you can get answers and treatment soon.

Abby

A Mestinon trial is how my doctor arrived at an MG diagnosis - I only had one "iffy" result on ALL of my tests, but I was able to take Mestinon at a rather high level with no problems. If your body doesn't need it, you will definitely know it!

If you think this might be what you need, INSIST on being allowed to try it. I would be willing to bet that there are more people who test negative on the antibody test who still have MG and would benefit from Mestinon.

Have you had a Tensilon test? That was what "sealed the deal" for my doctor. My eyelid droops, but not as much as my doctor is used to seeing. She was skeptical that I had MG, but when I was able to take as much Mestinon as I did, she said that was enough for her. I'm still fairly new to this, so we are still experimenting with the right dosages for me, but I can definitely tell the difference when I am on it (and when I have gotten too much)!

Also, get a second opinion from another neurologist - one who is willing to listen to you. That can mean all the difference in the future - if you aren't comfortable with your doctor or don't think that he/she is going to help you, you aren't going to go and see them until things get really bad, and that's not a good thing if you are dealing with MG -

Shalynn,
I was started on Mestinon several months ago after 7 years of double vision (and a few other symptoms). A neurologist prescribed it to me after an inconclusive Tensilon test. Since taking the Mestinon, I have noticed a mild and temporary improvement in my double vision.

As with Abby, my neurologist is hesistant to prescribe steroids without a conclusive diagnosis. I was recently evaluated at Mayo Clinic. Tensilon test was positive; however, SFEMG was negative. So the picture is still not clear, but they advised to continue the Mestinon for right now.

I'm not sure if an ophthalmologist can prescribe Mestinon. The ophthalmologist I saw recently was suspicious of MG (even tho tests several years back were all negative), so referred me to the neurologist I am seeing now.

Can your eye doctor speak with your neurologist directly and recommend trialing you on Mestinon? Or refer you to a neurologist who would consider this option? Mestinon is considered a safe drug. You would know fairly soon after starting to take it if you see any improvement.

Good luck to you. It's been a long journey for you and I hope you get some answers soon.
Cate

Abby, Thank you so much for the information. It's good to know about Mestinon being a safe and well tolerated drug. If you don't mind me asking, what are some of your symptoms? I have so many symptoms that scream MG, but I have others that don't. I have some sort of neuropathy, but I think I must have two different illnesses.

Thanks again for your help.
Shalynn

Teresa,

I have not had a Tensilon test. Did you have yours done in the hospital? Did you have any side effects from the Tensilon?

I have seen so many neuros. I'm rather happy with the one I have now even though she is 3 hours away from me. Still, I want one who will continue to look for answers for me. I'm afraid that when she sees what Mayo said....not much, she will give up on me. I went through most of the local neuros early on. No one would take me seriously.

If you don't mind me asking, what was your iffy test? Was it the Tensilon? My binding antibodies came back at 20, which I think is almost borderline, but I'm not sure.

Is there any way we can post pics somewhere? I could show you my eyelid drooping. lol

I will be seeing my eye doctor the second week of July I will definitely bring all this up to her. She may be one who can advocate for me.

Thanks again. And, sorry if I've asked too many questions.

Cate,

Thanks for your reply. It's interesting that you were recently at Mayo too. What did you think? I am very grateful that I went there, but I felt as though I didn't learn much more than I already knew. lol Anyway, it looks as though you had a more extensive evaluation. I saw a general neuro, which I don't think helped things. I had the EMG, but not single fiber, no MUSK test either.

I think you're right, I'll see if my eye doctor can refer me to another local neuro. As I said before, she is the one who first brought MG up several years ago. Maybe with her input I'll be taken more seriously. Enough time has gone by that maybe I'll have better luck. I know my symptoms have changed and progressed over the years. For so long I was tested for MS. Now, I have more weakness and other typical MG symptoms.

Sorry for the rambling. Thanks again for your help.
Shalynn

If you don't mind me asking, what are some of your symptoms?

Hi, Shalynn. I'm not going to be very helpful here, because my symptoms are so atypical that the doctor doesn't think I even have MG. I tested negative for all three antibodies (AChR and MuSK, and the antibodies that cause Lambert-Eaton Myasthenic Syndrome). My SFEMG is mildly abnormal.

My only severe symptom is weak truncal/back muscles, so that I have trouble holding myself upright from the waist up as I walk or stand. I tilt from side to side. I also have mild weakness in my arms and sometimes in my legs. I was having trouble with weakness in my neck muscles, but that's improved. I had some brief trouble with double vision, and trouble swallowing a few times. No drooping eyelids. I can chew gum all day.

I still think it's MG because first of all, it's extremely fatiguable. It hits me in the late afternoon and late evening the worst. It goes away when I rest. I feel normal a lot of mornings. The Mestinon seems to be helping me a lot. And my CK levels are normal (that's an enzyme that muscles release when they're breaking down--normal CK levels rule out most kinds of muscular dystrophy).

I may have congenital myasthenic syndrome, which isn't an auto-immune disease--it means you're born with too few neuroreceptors (at least that's one kind). But I'm much too old (44) for that to be likely. CMS usually shows up in infancy, though it can manifest itself as last as age 30.

By the way--I've given these facts with some confidence, but I've gotten these things wrong before, so I hope someone will correct me if I'm mixed up.

Abby

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.

One other thing to look into as a possible concurrent condition is Celiac Disease/Gluten Sensitivity. Since you mention neuropathy, it is quite possible that following a gluten-free diet could be beneficial. Check out some of my other posts for more information about this -

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 :confused: Who knows?? I just want to feel better.

Thanks for your input.

Shalynn

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!

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.

Update!!
 

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? :p

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.

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

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! :hug: