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-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   1 tablet worsen (https://www.neurotalk.org/myasthenia-gravis/227570-1-tablet-worsen.html)

scrubbs 10-19-2015 04:17 PM

worsen
 
Has anybody ever have taking mestinon worsen their symptoms?

scrubbs 10-19-2015 04:37 PM

1 tablet worsen
 
I meant 1 tablet of mestinon worsening their symptoms? Like taking a tablet one day and feeling worse then waiting a day or two and taking another tablet?

juliejayne 10-20-2015 07:22 AM

Taking 1 (60mg?) tablet of Mestinon will have an effect within 30 minutes, and it will be out of your body within 6 hours.

If one tablet is making you feel worse.... go back to your Doctor. 1 tablet should not be enough to be an overdose, but if it is making you worse then it is clearly not working for you.

That may mean that you don't have MG. Or it might mean that you need a different medication. See you doctor.

scrubbs 10-20-2015 11:05 AM

positive
 
Had my blood work done last month. I have not been taking mestinon for some time now. Blood work came back positive when I went to UCLA last month so was told to start taking it again.
See a new neurologist next week now that I am back home. Maybe he may have some answers but the fact is I took a single mestinon on 3 different days that promoted trouble chewing and other symptoms including some difficult breathing.
High probability that this has never happened with a person with a positive diagnosis.

ErinBear 10-20-2015 01:43 PM

It might be that you need a different dose. My understanding is that having too much Mestinon can create problems, and a lower dose can work just fine. Perhaps a whole tablet is too high a dose in your case. When I started taking Mestinon, my doctor had me begin with 1/4 tablet. It might be worth asking your physician about trying a smaller dose to see if that would be effective. Then again, a different medication altogether might be better for you, too. I hope the doctor can give you some good advice when you see him/her.

Best wishes,
ErinBear

scrubbs 10-20-2015 04:01 PM

thanks
 
thanks, hope new neurologist will have some answers.

juliejayne 10-21-2015 04:21 AM

So what symptoms do you have without meds, and do any of them improve with meds. If not then clearly something is not right. Maybe a different medication is needed.

juliejayne 10-21-2015 04:27 AM

I see from earlier posts that you were on prednisone, IGIVs and Cellcept.

That being the case, I would be surprised if a single Mestinon tablet could make that much difference, BUT it could perhaps be an interaction with one of the other drugs.

scrubbs 10-21-2015 07:56 PM

started then stopped
 
I 2008 T tested positive for the AChR antibodies and treated accordingly.
After 2 1/2 years I was told I was stabilized because my symptoms were not as terrifying, (less severe and less frequent) and stated experiencing things that were not normal for one with MG.
1 example. I would feel pretty god in the morning and maybe run some chores. Instead of feeling less fatigued I felt even better later in the day. It's a long story how I ended up with this Neurologist but in mid 2013 my blood work came back seronegative and he slowed my treatment to 0. He refused to send me for a SFEMG fearing it could come back seropositive. I knew I was still inflictive and 3 other refused to send me for a SFEMG.
After an incident, I went to a Neurologist in Cal. that sent me to UCLA for a SFEMG but the blood work preceded me and I was positive again. That UCLA Dr. prescribed Cellcept and Mestinon with a referral to a Neurologist back home. The first Mestinon worsened my condition.
When I was being treated I was taking 5 60 mg. a day. Strange, but new Neurologist next week might have some answers. Thank you for your reply.

juliejayne 10-23-2015 03:55 AM

Let me state, that I am not a doctor, and I can only make suggestions from extensive reading, of what other people have experienced.

That said, it does sound as though you MIGHT have one of the CMS variants or some other Myasthenic syndrome. It is certainly possible that you might have MG too.

Obviously if your root problem is partly or wholly not an auto-immune disease (CMS are genetic defects) then taking immuno suppressants could cause all sorts of new problems.

I hope that your new Neuro takes a serious look at all of your history and gets to the bottom of the problem. Fingers crossed.

scrubbs 10-23-2015 01:39 PM

4 more days
 
Thank you again for your response. I see him on the 27th.

jvaagen 10-23-2015 02:12 PM

Please what ever you do DO NOT let him or her rush you untill YOU feel all your questions and concerns are answered. I've had a couple docs come in and ask few questions and slam bam thank you maam and out the door before I could ask THEM questions.

scrubbs 11-02-2015 10:33 PM

Juliejayne and jvaagen: Thank you very much for your responses.
The new Neurologist seems interested in helping me and set up my first IGIV for tomorrow. Maybe because he really respects the DR. from UCLA that referred me to him.
jvaagen: if anyone did not take the proper time it was me. There were questions I wanted to ask but did not make notes first.
Most importantly, I seem to be the only person with a positive diagnosis of MG that has had a negative effect from Mestinon.
I know there some people with MG that do not respond in a positive way to Mestinon but never a negative response.
Especially 1 single 60 mg tablet on 3 separate occasions over a 6 day period.
scrubbs

TXIzzy 11-03-2015 10:31 AM

maybe not the mestonon at all
 
Quote:

Originally Posted by scrubbs (Post 1178664)
Had my blood work done last month. I have not been taking mestinon for some time now. Blood work came back positive when I went to UCLA last month so was told to start taking it again.
See a new neurologist next week now that I am back home. Maybe he may have some answers but the fact is I took a single mestinon on 3 different days that promoted trouble chewing and other symptoms including some difficult breathing.
High probability that this has never happened with a person with a positive diagnosis.

My hubby has been dealing with MG for almost a year...He has tested positive,started with mestonon and is now on CellCept. The mestonon only took care of the drooping eyelid, while he needed the stronger meds for the double vision. It just seems to me that if your symptoms are worse it is probably the MG itself....the one thing we have found about this disease is that it is very unpredictable, and no two people are even the same. But you may have to suggest something stronger. Also several people here said how important it is to check the B 12. He was checked for that and it was low borderline, so he is on pill for that also. Hope this helps.


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