Symptom Confusion and the Need for a Timely Fix
 

I was recently diagnosed with MG (recent as in last week). I was started on Mestonin. My neuro told me to start with 30mg every 4 hours and increase to 60 if needed. The 30 didn't do anything at all so, after a couple of days, I increased to 60. I became overwhelmingly sweaty and hyper and the twitching (which had gotten worse with only 30mg) became ridiculous. I stopped taking the drug and called my neuro. He told me that people often have side effects but that I would get used to it and that I should try 45 mg instead of 60. I tried 45 but still got the side effects. Now the plot thickens. I have 2 severely herniated cervical discs that are indenting my spinal cord. Obviously, I am scheduled for surgery next month but need to get my meds straightened out since MG patients have so many problems with anasthesia. I am, therefore, on a time constraint. Aside from that, the symptoms of the pressure on my spinal cord include weakness in my arms and legs (sound familiar?) making it very difficult to tell if the Mestonin is even helping me because of the problem with my neck. To add one more difficulty, I have been having periodic panic attacks off and on for the last year or so. Now I'm so upset about the side effects of the Mestonin that I think my anxiety is exacerbating the side effects. Does anyone have any sort of advice? I'm desperate due to both my desire to start fixing the MG (as much as it can be) and the time constraints due to my impending surgery.

Thank you so much.

DeliaDee, HOW were you diagnosed with MG? Via bloodwork, EMG, SFEMG, Tensilon test, symptoms, or ????

My bloodwork is normal with the exception of RNP antibodies, which the neuro thinks is due to MG. The diagnosis was due to symptoms, repetitive nerve stim, and single fiber EMG. I had some more blood work a couple of days ago and will find out the results in 2 weeks. Everyone, including the EMG technicians, knows about my neck issues. I only found out about the discs because my neuro sent me for an MRI. Really, I don't know for certain that I have MG yet and won't feel secure in the diagnosis until the results of the final tests come in but my neuro feels "98% certain" of the diagnosis.

DeliaDee, sounds like you have a very competent neuro -- and that you most likely DO have MG -- the SFEMG and repetitive nerve stimulation along with your symptoms pretty much tell the tale.

Mestinon does tend to make one "antsy". It increases sweating -- actually increases most bodily secretions including urination. It DOES take time to get used to -- like weeks or months. I didn't up my 30 mg dose for maybe 6 months. It is one of those meds where TOO much can make you WORSE.

My two cents?? As long as you are swallowing and breathing ok, I'd just not worry too much about everything else as far as your surgery is concerned. The MGers who tend to have the most difficulty with surgery are the ones with Bulbar symptoms -- swallowing, talking, breathing difficulties. If you haven't shown any of these, yet, chances are that you will be fine. I have been told over and over that anesthesiologists know more about MG than most OTHER doctors in the hospital -- so, before your surgery -- just check and MAKE sure that yours knows what he/she is doing!!

There are lots of really, REALLY smart people in this forum -- I hope that they will pop in here and share their expertise!!

Hi, DeliaDee. Welcome.

Did the doctor explain the RNP antibodies? They are not MG antibodies.

http://www.aruplab.com/guides/ug/tests/0050470.jsp
http://emedicine.medscape.com/article/335815-overview

Do you have a rheumatologist or have you been referred to one? If not, it would be a very good idea to see one as soon as possible.

Were they able to say what caused the herniated disks?

Are you on any medications?

If you can, get copies of all of your test results. Obviously you need to have surgery if your cord is being compressed but you also need to be fully aware of any conditions you may have before surgery. That could make a difference in what drugs they use, etc.

For instance, if you have MG, using a pediatric gas to intubate instead of a muscle relaxer is a better way to go. It wears off more quickly after surgery and does not adversely affect the muscles in MG as much.

Did you notice if the 30 mg. made your muscles feel stronger? Even a small dose can make the muscles of people without MG feel stronger. Do you have ptosis (droopy eyelids)? Double vision? Have you seen a neuro-ophthalmologist? Are you short of breath too?

Mestinon can have different side effects for different people. I only had very slight sweating on the first day or two of taking it. I haven't had any side effects since and I am on 90 mg. every 3 hours. I've been taking it for nine years.

I know that panic attacks are personal but I'm wondering if you can point to an event or a drug that may have initiated them. Some drugs can bring them on or make them worse. Did you know that anger and panic can't exist in your body at the same time? Seriously, my psychologist let me in on that one. So if you can try to leave the environment you are in while you are having one, think of something that makes you angry and then, once it's gone, think of something peaceful/something you love that makes you feel safe. Try that.

I hope you get answers soon. You've got a lot going on. And, please, if you don't have a rheumatologist, get one right away.

Annie

p.s., Jana, you are really smart too, you know. And nice. And funny. Need I go on?

That's pretty much the problem. I'm having trouble talking and swallowing. My breathing is fine and my pulmonary tests came out very well. But the talking and swallowing is an issue which is why the pressure is on me. I will, of course, take your advice about the anesthesiologist. I'm one of those people who ask tons of questions and wants to know everything that's going on so that shouldn't be a problem. :)

Thank you for your support.

I just read Annie's links -- looks like you may have more than one autoimmune going on -- not all that unusual -- these things tend to run in packs.

So, you are Bulbar. Sorry to hear that, DeliaDee. Besides what Annie mentioned, your doc can get you STRONG before surgery by doing plasmapheresis or IVIG -- this is common pre-surgery treatment for Bulbar patients who are about to have thymectomies.

Welcome to the group. :)

Let me say this first... I have had many surgeries including back surgery for bad discs. And here I sit typing :)

TRY to relax, I know it is hard as we all have or are going through this. Mestinon side effects are bad sometimes but if it helps in any way it is worth it.

I see others all told you everything you need to know and remember to try to relax. Sadly I need help with that {xanax} But talking to many here has actually helped me so I don't need as many as I used to.

Once you get used to having MG and learning your limits you will be surprised how much easier things will be. We are here for support.

[QUOTE=AnnieB3;618365]I know that panic attacks are personal but I'm wondering if you can point to an event or a drug that may have initiated them. Some drugs can bring them on or make them worse. Did you know that anger and panic can't exist in your body at the same time? Seriously, my psychologist let me in on that one. So if you can try to leave the environment you are in while you are having one, think of something that makes you angry and then, once it's gone, think of something peaceful/something you love that makes you feel safe. Try that.
QUOTE]

Annie, you are right about this. I found by experimentation that the only way to make my panic go away is to get angry first. When the fear was really bad I listened to heavy metal music that felt full of anger with lyrics I could relate to (I am laughing about this now but it worked for me and I was desperate for something to help me). Once I was able to get angry, then the fear went away and then I had a chance to think positive thoughts so I could start healing.


DeliaDee, Mestinon makes me nervous if I take too much at one time. I had to adjust my dose to take smaller amounts more times throughout the day. To avoid the nervousness (and other side effects) I only take 30 mg at a time.

I hope this helps

panic attacks?
 

Thanks Annie,

could I join what you said about Jana?

this psychological explanation is very interesting. I wonder if the anger the neurologists caused me so many times, is what made it easier for me to tolerate my respiratory symptoms? so in fact they actually did me a lot of good then?

also, my concern is that those "panic attacks" may be in fact respiratory muscle weakness that has been overlooked by the neurologist. as we all (unfortantely know) this is not a "rare" occurence.



alice

[QUOTE=DesertFlower;618468]I love that idea of forcing oneself to get angry. Thinking about it, it makes absolute sense. The problem with anxiety is that it causes your emotions to go everywhere. Everything turns into a potential cause of trouble be it medical, financial, etc. Anger would enable one to focus. I always like to get my anger out whenever I feel it or talk about something that scares me because when you keep it inside, it tends to get bigger and take over. When you let it out, you control it rather than letting it control you. With the panic attacks, I've pretty much been depending on the fact that I know they're panic attacks, and will, therefore, not hurt me, to try to calm myself down but clearly it doesn't always work. I like your method of using music to get myself angry. I'll definitely try that.

In the meantime, I think I'm going to take my dose of Mestonin down to 15mg every couple of hours see how that goes for me. I've always been sensitive to medications. It's not really bothered me since I always refuse drugs unless it's absolutely positively necessary - as in this case. Even the horror in my neck is dealt with using salsalate which is easier on the stomach than aspirin and with not so many potential problems as ibuprofen. I won't take anything stronger. So I might need a slower, more careful dosage upgrade.

----------------------------------------------------

I really can't thank everyone enough for responding to my problem and offering advice and a caring ear. You all are amazing and wonderful and I'm so grateful and thrilled that I found this forum.

I really don't think that's the case. As I said, my pulmonary tests came out very well - especially for someone who smoked off and on (mostly on) for 23 years (I quit in October). Is it possible to have respiratory problems but have good results on the pfts? After ekg, echo, pfts, and stress test, no one (neuro, rheumy, cardio), the only trouble anyone's found is a small atrial defect that was too small to be corrected and just has to be watched every few months to make sure it doesn't grow. Could there be respiratory problems without any of those tests showing it?

Okay. It's been an hour since I took the 15 mg. Within a half hour the severe diarrhea started, I was shakey and sweaty and drooling. The usual. Then I looked in the mirror because my mouth felt funny and my lips are puffy. Could it be that I am just not meant to take this drug? It seems to me that 15mg is too small a dose to cause this much trouble. Are there any others that can help or would I have even worse problems with the others? I took DesertFlower's excellent advice and made myself get angry and that negated the panic I felt coming on so I know that's not the problem. I also know that my vision is worse now and I think I'm weaker than I was before I took the pill though that could just be the shakiness making me think so.

If you have puffy lips, you could be allergic to something in the Mestinon. Please consult with your doctor (today).

On that small of a dose, it shouldn't make you weaker if you have MG. I started out that small nine years ago and it made me feel much stronger.

If you can handle Benadryl, at smaller doses, it will counteract the Mestinon and take care of any allergic reaction (or possibly not take care of it if it's a bad one). Mestinon and Benadryl do the opposite thing to acetylcholine; Mestinon increases it and Benadryl can decrease it.

While I would be more than willing to give Susan (Desert Flower) credit for the anger/panic attack thing, it was actually me who brought it up.

Have your doctors thought about polymyositis? That's a possibility. I really hope you can figure out what is causing your symptoms - definitively that is.

Annie

Annie is right about the Benadryl, I have to take it with everything, even the mestinon.

I am like you in that I am super sensitive to all medications. But you do need to talk to your Dr. asap about just how bad a reaction you are having to the mestinon. I know I used to react that way but I guess after taking it awhile my body became adjusted to it and I don't react like that anymore, plus I do take the benadryl and I really think that helps.

DeliaDee, have you recently been exposed to any pesticides? Has your house been treated for termites or other bugs? Do you have pets inside your house that you treat regularly for fleas, ticks, etc.? Have you been exposed to some OTHER chemicals (or OVER-exposed) within the past year or two?

I don't have any benedryl in the house (I always go for natural treatments when something minor comes up and never so never have the basics like benedryl on hand - probably foolish on my part) and getting some in this snowstorm is impossible. It's been 3 hrs. since I took the mestonin and, with the exception of some continuing puffiness of lips and tongue, I feel much better. I will talk to the doctor about benedryl. Until I can, I think I'll postpone the medication again. Thanks Annie and JoanMarie. Hopefully, that will work.

No. I tend not to get exposed to too many chemicals if I can help it. Even my shampoo and shower gel is organic. In fact, all of the cleansing agents I use are organic. Heck, the bug spray I use is organic. What can I say? I'm just a tree-hugging, organic, vegetarian hippie-girl. :) When I have a cold, I use essential oils; when my knee bothers me, I use acupuncture and massage - that sort of thing. I work out of my home so that's not a problem either. It would be easier if I could point at a drug or a chemical in my house and say "Ah ha!" but alas no.

That is GOOD -- being careful about chemicals -- what you put into your body -- and around your house!! You NEED to live this way -- I do, TOO -- for the sake of MG, allergies, and chemical sensitivities.

Mestinon is "like" a pesticide -- I was sort of hoping that you were in "overload" -- that you were already getting "some" from another source. I overdosed one time when I petted a goat at a zoo that had been treated with one of those "pour it down the back" things to keep flys away (no one had POSTED this bit of info!!!). I had to leave in a wheelchair.

Wow, that's horrific! It's so scary when you think about how every little thing affects every other little thing. Ever since this mess started with me, it's become ever clearer that our chemical-laden, over-medicated, fake-food way of life is probably the reason the rate of autoimmune is at an all-time high. I've been organic for years simply because I feel that, if you care for the earth at all, it's the only way to do live. But there's so much going on in the air and water and land that you can't protect yourself from everything no matter how green you try to live. You proved that by petting that goat!

Are you taking the name-brand or generic? It "might" make a difference. They may be using different binders -- the inactive ingredients that "hold" the medicine into the pill form.

Some MGers can only take the syrup form. You might ask if you can try.

Mestinon doesn't work for everyone -- BUT, you DO want to see if you CAN get it to work for you. Even with the somewhat bothersome side effects (that DO tend to subside with time), it is the LEAST damaging of the treatments, in my opinion.

Prednisone "might" help -- but, it can do some major damage to other body systems. It is the "good, bad" drug. Osteoporosis, diabetes, cataracts -- just to name a few of the likely side effects.

Cellcept, Immuran, Sandimmune -- other immune suppressants -- all carry the "possibilities" of cancer or organ damage or...........and there is no guarantee that they will even work!!

Plasmapheresis and IVIG carry their own risks........but, you may eventually need these anyway.

In short, Mestinon can be "uncomfortable" in the beginning -- HECK, it is a pain in the BUTT -- literally!!! You spend a LOT of time in the POTTY, at first!! But, if you can make a go of it, compared to the OTHER treatments, it really is not so bad.

Sorry to be so blunt, DeliaDee. The opinions expressed here are MY OWN -- and may or may not be the same as ALL other MGers. We are "snowflakes" -- different symptoms -- different reactions to meds -- and different approaches to the disorder we call "the beast".

If that puffiness of the lips and tongues continue, you need to get some help! Some drug stores deliver, as do some grocery stores. PLEASE don't wait. I went from your symptoms to full blown severe allergic reaction with hives from head to toe and an inability to breathe many years ago. It's dangerous!!! I hope you'll be okay.

Someone can have a side effect of Mestinon like increased sweating, saliva, etc. You can have overdose symptoms, which it sounds like you may be having, that include increased weakness (and paralysis). Or you can have an allergic reaction to Mestinon, which you may be having too.

When they gave Mestinon to the Gulf War vets, they could not tolerate Mestinon (to keep Sarin gas out of the neuromuscular junction). Why? Because they have a normal amount of acetylcholine. Anyone with a normal amount of acetylcholine would have that reaction. No amount of food taken with it will stop those symptoms. You have to wait until the drug wears off. Or take Benadryl.

And neurologists (I saw your post below, Sue) don't often read all the info about drugs. They can't be bothered.

Sorry guys, but I'm being a downer again. DeliaDee has to have a definitive diagnosis before she even thinks about all these drugs and she hasn't gotten that yet.

Hi DeliaDee,

welcome to the Neuro Talk,

Whew, I checked in yesterday and there was 2 posts I think, then my computer shut down!!!!
I have read, or tried to read all the post here, my brains in a bit of a " I don't feel like concentrating thanks very much" kind of mood, so I might have missed what Iam about to post about.

Has anyone said anything about taking mestinon with food, if I take it on an empty stomach I get very very sick. All the dr's and nurses insist it be taken on an empty stomach, I guess they've never taken it.

Even if is with a small amount of food, just to line the stomach, it helps.

Like I said, I hope I havn't made an idiot of myself, and just repeated what someone has already said!!!
Kate

Kate,
My instructions from pharmacy says to take Mestinon with food to prevent stomach upset. Neuro never said one way or the other. Crazy for such opposite info on same drug.
Sue

Hi
 

There is a thread on the MGA forum here in the UK where someone is experiencing symptoms of an allergic reaction to Mestinon.

They have a rash when they take the mestinon and some people find that they can't tolerate it due to the allergic reaction and not the side effects.

Allergic reaction - swelling of mouth, lips and tongue etc, skin rash

Side effects (although they can be horribly severe) - nausea, vommiting, the runs, stomach cramps, drooling (I've had all these! LOL)

The ingredient that people tend to be allergic to is the BROMIDE.

I would contact your Dr if your mouth/ lips have swelled its not a good sign and your next reaction could be more severe.

Good luck

Love
Rach

Thank you. This makes sense. A few people here have suggested it might be an allergic reaction. After I read your post, I looked up bromide and it does seem like this might be the problem. I had the nausea, runs, cramps, and drooling but what really bothered and scared me was the swelling. Especially combined with the drooling - it felt like I was going to drown in my own drool (and I'm not even a rock star from the 70s!). :cool: My doctor and I need to have a lo-o-o-o-ng talk about all of this.

symptom confusion and the need for a timely fix
 

Delia Dee,
I had alot of these same side effects when I first started the Mestinon. The excessive drooling was the worst! I had days where I literaly vomited from all the saliva. I never have had any of the swelling though which I know is your main concern. I still can't tolerate much Mestinon without it making me weaker than the MG does untreated and it didn't do much to help my droopy eyelid. I have been on Pred for several months now and that controls the eyelid droop but has major side effects. I am in the process of tapering off of it. It is important to eat something when you take the mestinon even if it is just a couple of crackers. Desert Flower told me when I was having so many problems to drink plenty of water and that has also helped tremendously. I don't take any Mestinon until I feel I need it. Some days my first dose is around 7:00 or 8:00 am and other days it is noon. I have found that if I take it when I don't feel like I need it my weakness becomes so much worse. I hope you get some answers soon. I remember how frustrating it was when I first started the Mestinon. I had such high hopes but never really got the results I expected. It truly is a medication that has to be adjusted to what works best for you. My Neuro told me to play around with the dose until I found what worked best for me. You can try smaller doses more often or simply as needed. Hang in there it does take time for the body to adjust to any new medication.
Kendra

About Mestinon,

I love Mestinon even with all the side effects, which I have slowly learned to either live with or minimize. Without Mestinon I am pretty much bedridden...

I can't tolerate Mestinon on an empty stomache, because this seems to quickly bring on the side effects (drooling, diarrhea, twitching, nervousness, cramping, etc). But if I eat a little first and then drink a BIG glass of water afterwards, I tolerate it pretty well. I do have to drink extra water all day as well to keep the side effects tolerable.

I don't have an allergic reaction to Mestinon which is serious and needs immediate attention as Annie said earlier. I worry about becoming allergic to it, since I seem to easily get allergic to medicines, but ok so far.

:hug: