Having numbness and tingling in mouth with mestinon
 

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.... :)

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

Doing OK
 

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:Tip-Hat:

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:Thank you:

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.

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!

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

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.

Doing better
 

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?:confused: lt is difficult to know what to do.
Glad you guys are here

told to stop taking calcium by PCP
 

I am on 10 Mg per day. My PCP told me to stop calcium at my age (57) because it wont help my bones and may calcify my arteries. I will ask Dr Franklin
Thanks
Sandy:hug:

There is a learning curve where MG is involved, and you will make mistakes and learn a lot along the way. After a few years (yes, years) you will have a lot more confidence and experience and these strange and scary incidents will become fewer and the "well managed" times will become more of the norm.

Thank God for that.

I am doing better on 60 Mg of mestinon 3 times a day.(for now)
My body has always done strange and scary things with medications. I have been taking herbs with no problems for years. I really hate having to rely on these drugs for my well-being.

The experience here and willingness to share is amazing!! My friends and family just don't get it.
Sandy
:grouphug:

Sandy, If you don't mind, I wanted to add a couple of thoughts to the discussion.

The MG expert who diagnosed my MG told me that some MGers (incorrectly) describe weakness as numbness. Think of how your arm, for example, feels when you sleep on it and it goes numb from circulation being cut off. Muscle weakness can get so bad that your muscles feel "paralyzed." At that point of weakness, they will feel heavy and "numb."

Mestinon does not effect all muscles equally. And not all muscles behave equally. MG is considered a "head and down" disease. It normally begins (not always) in the head/neck area. Some people believe that it takes the larger muscles longer to experience weakness. Whether that's due to a concentration of nerves or smaller muscles, smaller muscles tend to be more susceptible to Mestinon dosing. Although, Mestinon doesn't do squat for some people's ptosis and double vision. This is seriously a stupid, unpredictable disease and what is normal for one MGer isn't for another.

For example, if you have mild ptosis and moderate shortness of breath, Mestinon might get rid of your ptosis but not completely get rid of the SOB. If you take more Mestinon, hoping to help your breathing, you might O.D. the ocular muscles and get twitching. That's one main reason dosing with Mestinon is tricky.

Also, some people need less Mestinon when they're not doing anything. And more when they do. So that standard "take 3 - 4 doses of 60 mg. per day" thing that doctors say isn't always the best way to go. It does take time to figure out what your body needs. For me, my body needs that 80 to 100 mg. every day, every 3 hours around the clock. It needs a bit more (100 mg.) when I run errands. I can't do the other drugs, however, so my situation is different.

There's also the possibility of taking less when you're not doing anything, like 30 mg. more often and then a higher dose when doing activities. It really is a trial and error thing, unfortunately. It's not like other drugs where you take a standard dose at specific times. Since MG is variable, the dosing of the drug(s) can be too.

Don't play around with dosing without first speaking to Dr. Franklin, unless he has approved that. You're not only protecting yourself but your doctor as well.

I hope that helps. And I hope you're writing down what you take and when and any symptoms, etc. It helps when you're first starting out to look back and know your pattern of use/needs.

Annie

this is complicated
 

Thanks Annie; your two cents is always welcome!
It is very reassuring to know that I can ask this group anything and get such thoughtful and helpful answers. I don't know if the numbness is weakness. I have not had it since I dropped my mestinon dose.

I do feel much better overall. My ocular symptoms are still troublesome but better also. I am hoping the prednisone is kicking in now. I see Dr Franklin's NP tomorrow. I will get clarification on how to finesse my mestinon.

I leave for Italy on Friday. Fingers crossed!
Sandy:rolleyes:

Hello Sandy,
Whatever happen with the numbness in your mouth. I'm experiencing the same numbness in my upper teeth, upper lip and left side of my nostril. Just curious I scheduled an appointment with my neurologist so hopefully we can figure something out.

Hi Kmill,
The numbness only happened once in my first few days taking mestinon. I take more now and have never had it happen again. If I recall, the on call doctor had me lower the dose until I saw my regular doctor. I hope you figure out what is going on. Good luck
Sandy:)