[sandy56]

The last few doses of mestinon I have been having increasing numbness and tingling in lips; tongue and roof of mouth 30-40 min after taking it. I am taking 60 Mg at 8 12 4 & 8. I called the doc on call and he said to go to ER if I can't breathe or swollow. Also to drop mestinon dose down to 3 times a day tomorrow. When I asked if I should take 8pm dose he said I could try it and see what happens and go to ER if needed. It has been 90 min and no change in numbness. It feels like novacaine in lips. Otherwise I feel ok just a little queasy. Anyone had anything like this with mestinon?
Thanks
Sandy

[Fortunatos]

Originally Posted by sandy56

The last few doses of mestinon I have been having increasing numbness and tingling in lips; tongue and roof of mouth 30-40 min after taking it. I am taking 60 Mg at 8 12 4 & 8. I called the doc on call and he said to go to ER if I can't breathe or swollow. Also to drop mestinon dose down to 3 times a day tomorrow. When I asked if I should take 8pm dose he said I could try it and see what happens and go to ER if needed. It has been 90 min and no change in numbness. It feels like novacaine in lips. Otherwise I feel ok just a little queasy. Anyone had anything like this with mestinon?
Thanks
Sandy

Hello Sandy, Smart girl to call him!! I like the doctor. Tingling and queasy from mestinon, sure, an allergy to it?...possibly. Watch for swelling in the tongue, lips around your face--that's concerning.

Your symptoms can be attributed to quite a number of things, but at this point, whatever is unusual to you (and I know you are new at this) or whatever doesn't feel right to you, or if you are at all concerned, listen your doctor. And I know YOU will....

[cait24]

Sandy, have you had your thyroid checked? Thyroid both hypo and hyper tend to run with MG and the conditions make each other worse.

I have autoimmune hashimotots hypothyroiditis and MG. One of the symptoms of hypothyroidism is tingling and numbness in the face particularly around the mouth and lips. I get this symptom a lot and it tends to happen more as the day wears on. If you haven't done so already, please ask them to check your thyroid hormones.

let us know how you do,
kathie

[sandy56]

Originally Posted by cait24

Sandy, have you had your thyroid checked? Thyroid both hypo and hyper tend to run with MG and the conditions make each other worse.

I have autoimmune hashimotots hypothyroiditis and MG. One of the symptoms of hypothyroidism is tingling and numbness in the face particularly around the mouth and lips. I get this symptom a lot and it tends to happen more as the day wears on. If you haven't done so already, please ask them to check your thyroid hormones.

let us know how you do,
kathie

I go back to doctor on Tuesday and should get antibody and bloodwork results then. I am not sure what was drawn. The numbness and tingling has calmed down but not gone. I think I will skip my 8:00 pm dose and see how it goes. I am a bit concerned since my diplopia; ptosis and weakness have been coming back in 2 - 21/2 hours. I was able to eat dinner without any problems so that makes me feel better
Thanks for the reassurance

Sandy

[sandy56]

Originally Posted by Fortunatos

Hello Sandy, Smart girl to call him!! I like the doctor. Tingling and queasy from mestinon, sure, an allergy to it?...possibly. Watch for swelling in the tongue, lips around your face--that's concerning.

Your symptoms can be attributed to quite a number of things, but at this point, whatever is unusual to you (and I know you are new at this) or whatever doesn't feel right to you, or if you are at all concerned, listen your doctor. And I know YOU will....

Thanks for the reassurance. I feel better knowing the group is here to bounce things off of. I just have some minor tingling now( like stinging nettle) I was able to eat my dinner without difficulty so I am feeling a bit better. I think I will skip the 8pm dose and see how it goes
Thanks
Sandy

[southblues]

I used to get tingling from the mestinon, and now I don't. The first few times it happened I was worried. I got one of the nurses from work to take my blood pressure and look me over. Everything seemed normal. I only seem to have the problem if I take a pill too soon after the last one.

[4-eyes]

I am allergic to mestinon, but my allergic symptoms were intense itching/rash on my arms and face and general feelings of unwellness and extreme axiety and shortness of breath. I have had the tingling sensation when I became allergic to penicillin.

I hope you find some answers soon, and it isn't an allergic reaction!

[AnnieB3]

Sandy, Did they put you on Pred too? Sorry, I've got a stupid headache today and can't remember.

If the numbness and tingling was between doses, I would've thought it was from a lack of oxygen.

Numbness and tingling are not mentioned in the Mestinon PDF (below).

Are those symptoms there between doses?

If you are on Pred, and it is kicking in, then you might be overdosing on the Mestinon. I doubt it but I thought I'd better put all possibilities out there.

Do you have Benadryl? Liquid Benadryl is best because you can titrate the amount you take. It does the "opposite" of Mestinon, so it can make MG worse. If you get the numbness and tingling, try a teaspoon of it. If it goes away, you probably have your answer.

Some people can't tolerate the Bromide. Are you on the generic Mestinon? If so, you might ask Dr. Franklin to say that you need the brand/Valeant Mestinon due to an allergy! TriCare can't fight that either.

Contrary to what the insurance industry would have you think, all generics are not created equally. There can be major differences between them, including strength of the drugs.

Allergies, like 4-eyes said, don't necessarily come on strong right away. But they often keep increasing in severity after continued exposure. I'm glad you're seeing your doctor soon.

Keep a journal of what's going on and when, for you and Dr. Franklin.

Having had a variety of allergic reactions, I know how potentially dangerous they can be. So be prepared for the idea that you might need the ER. Benadryl is great to have on hand but a big reaction usually needs more drugs and pronto!

Annie

[huntress]

Are you on prednisone because tingling too can be lack of calcium in your body. I'm not sure but that's what I have read online. Hope and pray all gets better for you.

[sandy56]

Thanks Annie and Huntress

I think my prednisone is kicking in and I may need less mestinon. I had been having more queasiness after taking my mestinon for the last few days. I had also noticed minor tingling in my mouth. Now that I think back on yesterday; I realise I felt much worse after my noon dose. It was about 30 min after taking my 4pm dose that I had the significant numbness and tingling. It lasted about 90 min. I did not take my 8 pm dose and felt better and better. I slept well with good O2 sats and felt good this morning.

I am taking my mestinon 3 times today (not 4) per the on call docs instruction. I am on a generic. I took my 8 am dose and feel fine. I have still been having significant diplopia and ptosis even with the mestinon.

Yesterday was hot and humid here(around 90°) and I had been out doing errands all morning. This is a very confusing disease and it is hard to be sure what is going on. Do I need to rest; take more meds or take less meds? lt is difficult to know what to do.
Glad you guys are here