hi I am new here, and recently diagnosed with MG
 

hi I am new here and recently diagnosed with MG. you can read my thread on how i came about the diagnosis here

My doctor gave me an EMG which showed a tendency towards myasthenia gravis. and he subsequently put me on mestinon.

my questions are what other Meds are used to treat this??

and also, has anyone had bad reactions to aspirin while having MG, because I seem to have extremely bad reactions to aspirin.

Welcome to the MG site!

No I have never had any problem with aspirin. There some folks who have a reaction to Mestinon - but not like what you are describing with the aspirin. lDo you take a lot of aspirin daily? It can cause stomach prob;ems all by itself.

Did they test you for antibodies? Has the Mestinon made a difference in reducing your weakness? Just wondering.

Sue

they didnt test for antibodies yet, and/or it might be in my upcoming bloodwork tests already. but they are looking to make a muscle biopsy to confirm. mestinon has made a difference, although its only been like a half day on it. ill continue it from there.

what are the side effects people get from mestinon?

Side effects vary from nothing (me) to having diaherria. Excessive Mestinon (for your condition) can make you as weak or weaker than not enough. Most everyone finds that their Mestinon dosage is almost an art - - everyone's body responds to different degrees under different conditions.

That's why your neuro is stepping up your dosage over time. Listen to your body and you will know when you have found the optimum dosage. Be sure to share info with neuro. Most understand that establishing the proper meds for each individual is tricky.

Good luck - hope you feel stronger!
Sue

I'd keep a daily journal of how you feel, while you titrate up your doses. This is more accurate for your doctor, than your memory, or verbal ability in recalling important details.

Hi, Welcome. Bruegger, do you have a more informal name?

What kind of reaction do you get with aspirin?

I'm a bit worried about possible drug interactions or contraindications given the list of drugs you're on. Some drugs are not good to take if you have MG. Here's a website for you: www.myasthenia.org At least check with your pharmacy to make sure. Some drugs can make MG worse.

An EMG is not enough evidence to "prove" you have MG. I hope they have done both the Acetylcholine Receptor Antibody (3-part test includes binding, blocking and modulating antibodies) and the MuSK Antibody tests.

Are you having the muscle biopsy done at a "large" medical institution? If not, the results may not be as accurate. They can't always "see" the neuromuscular junction.

It's a big learning curve having MG. I hope you will get a more definitive diagnosis and then learn as much as you can.

Annie

hi I am new here, and recently diagnosed with MG
 

Hi Bruegger,
Welcome to the group! I am sorry you have MG but you have definitely found the right place for support and info.
To answer your questions about what other meds are used to treat MG, Most Drs. start with mestinon and depending on the results may add other drugs. I started on mestinon a few months ago with not much in the way of results. I now take Prednisone every other day and it has made all the difference in the world. There are many other meds out there which Drs. may try but basicly they are all immuno supressants. Prednisone is fairly fast acting but there are others like Cell Cept that do pretty much the same thing but can take 6-12 months to kick in. Alot of us in this group are on different meds. Some take Imuran, some Cyclosporine, etc. They will be able to give you much more info on what they take and what has and hasn't worked for them.

To answer your other question, I personally have not had a bad reaction to aspirin. What kind of reaction are you talking about? Is it stomach issues or something else?
Kendra

Hi and welcome to the best site for MG. I too cannot take asprin, I am hypersensitive to ALL medications. I only take mestinon and have to take benedryl with that. Every person is different yet the same with MG, we all have the weakness but all suffer in different ways as you will learn from reading the posts. The one thing we all have in common is we have each other to lean on and learn from.

benadryl, well benadryl used to really knock me out, but now that im accustomed to it. it doesnt so much. it's supposedly like one of those anti-histamines used for extrapyradimal side effects from anti-psych meds. which i dont know why they use it for that reason, as it's very sedating on top of anti-psych meds.

which is why i only use artane prn from now on for that reason. as for the aspirin i get a similar effect from aspirin as i do from artane sometimes. but in aspirin it's more profound. with aspirin it's almost like the extra fine particles don't completely get digested down my esophagus and end up causing havoc up in my throat area. like it seeps down different parts of my throat. and i can feel it gristling and sandy like texture, almost like cutting through parts of my throat. and then the day after this happens i get like a terrible hangover of weakness and overall fatigue

the main reason i take all those other psych meds, is i have a terrible time sleeping. part of it is psychological, like whenever i get to the point where i feel tired, something attacks me, whether it be an actual physical problem, or whether it's a somatic part of my body attacking away at it. well it's attacked, and so i no longer feel tired and keep moving along, numb to all feeling. it could be a defense mechanism of some sort, as i have nightmares at times. so instead of getting up at the same time every day, i end up constantly chasing sleep. even if at times i just lay there trying to sleep, or lay there in a nonrestorative sleep state and wake up feeling worse than i did before i went to sleep. so therefore that explains the use of lyrica or gabapentin that i use. also looking into prazosin to deal with the nightmares caused by h1(histamine) antagonism of some of the other sleep meds i take, like seroquel/atarax. as for the seroquel it may be causing some cardiovascular issues that may be hurting my progress.

the mestinon helped very well at first had alot of energy. then i had excessive sweating, nausea and muscle weakness on the third day of taking it. and only at a half a tab, 30 mg a day. so on the third day i stopped taking it due to muscle weakness, at just 30 mg a day!! the doctor told me to call with results of how i was doing on the med. which ill do, ill also mention the Musk test, and acetycholine antibody test.

i looked at that site annieb3, but didnt find any part of that site talking about medications and effects on MG!

Artane is an anticholinergic.... can't use if you have MG.

The drug list you have to tinker to find. On it are anti-psychotic meds like Risperdal. (I don't think the list is updated to include your Seroquel)... but I'd say that the Seroquel is not allowed either.

You really need to talk to your doctor who prescribes the psych meds for you. In fact...you need to get the other test results to be sure.

This is the link, but it is not working right now:
http://www.mgauk.org/main/mgdrugs1.htm

acetycholine antibody test came back false. the emg was positive. and the doctor is considering a muscle biopsy which will be discussed next time i see him in january.

and i assume since seroquel is a derivative of clozapine that it also is not allowed.

so i was thinking of asking the doc, to maybe try me out on say another 'don" antipsych med called geodon(ziprasidone) and maybe atarax to help sleep instead of the seroquel.

Bruegger, I'm a little concerned here. First, you do not have a definitive diagnosis of MG, which is absolutely essential before you start having MG drugs thrown at you (other than Mestinon). And you should not go changing your other meds until you know for sure you have MG!!! Changing medications is very hard on the body.

Has your neurologist said you have fatigable ptosis or fatigable weakness? That is the hallmark of MG. Did you have a Single Fiber EMG or a "regular" EMG done?

Is your neuro an MG expert?

The medications which are contraindicated in MG are a "relative" contraindication. Some people can handle drugs like Benadryl (I can at small doses) but others can't. The only drug which is 100% contraindicated in MG is Ketek, a.k.a. Telithromycin. You CANNOT take that antibiotic if you have MG.

It is very important to get a solid diagnosis first. Especially since you appear to have so much else going on.

We can't advise you on any of the drugs you are taking!!! That's between you and your neurologist and/or primary doctor. I cannot stress enough that you can't go and substitute a drug for another drug and expect everything to be okay.

None of us know your situation and even if we did, we are not qualified to help with anything but support for those who have MG and some basic information about the disease.

I'm just feeling very uncomfortable with this overall discussion. Please call your neurologist before January.

Annie

right but u act like ive got a solid ground of insurance and live in boston, where i could go to mass general. i cant. i go to boston neurological, or a blue hills neuro doctor.

right most of my references on psych meds are unwarranted here, but im just telling my story. part of my story is sleeping troubles which i discussed, im sorry if no one else that ever had MG ever had any sleeping troubles and just has MG. hmm let's see, im trying to look into every diagnosis that has sleep troubles as a symptom, but im not finding any or sorting that out.

and i cant find any that have one of my main symptoms, which is being unable to get a full deep breath without my neck/back cracking under the pressure. the only one that my neurodoc could point to is MG.

and im sorry if it makes you uncomfortable but mestinon does have a history of causing neurological or nervous system side effects. like nervousness, dysphoria, and the like. so you cant cop out on that.

Oh, Bruegger, I'm sorry if I came off like that. I know that not everyone has insurance or even really good insurance.

If you do indeed have MG, and can't breathe in well, you need help sooner than January is what I meant. Do you know of any pulmonologist who you can see to have breathing tests done? They are the doctors who can evaluate breathing conditions.

Have you had a sleep study? Probably, right?

What made me uncomfortable is the changing of medications quickly. It can cause even more side effects, which you don't need right now.

The Myasthenia Gravis Foundation website isn't the greatest (sorry guys) and I'm not even sure where the drug list is.

Do you take the chewable aspirin (81 mg) or the kind you swallow? Chewable aspirin is easier on the GI system because it basically dissolves in the mouth or shortly thereafter. If you have motility issues, I can see why swallowing/digesting anything would be hard.

I hope you will seek out help in an urgent care center or the emergency room if your breathing is bad (unable to breathe in) or you become overall very weak or can't swallow.

Annie

Hey Bruegger,

I was just wondering...Oh, welcome to the group, btw:)...But yes, I was wondering if you have problems with your spine. I also have Eustachian tube dysfunction, TMJ as well as MG. I have some problems with my spine (I just started a thread about it). I noticed that if I turn my neck in certain positions, sometimes my jaw will improve a bit (the stiffness), and fluid will actually leak out of my ears! I also found some info. stating that having reverse kyphosis can reduce breathing capacity by up to 30% because it puts pressure on the glossopharyngeal area, so it's all upper respiratory. Not sure if this is where you feel the breathing weakness, but it is for me.

A year or so ago, my dentist made a mouth guard for me, and he said that this can help in correcting spinal issues and therefore increase breathing capacity and improve sleep. You might want to check it out. I haven't used mine in a while, but I plan on starting again.

I hope that you get things figured out soon!:)
Nicky

in the past 3 months I've been to 3 doctors, an ENT doctor, and 2 neurologists. one neurologist looked at my MRI and said you're fine and kicked me out with a pamelor script. the ENT, did a larygnoscope down my nose, and gave me a script for prilosec and kicked me out.

and the 3rd neurodoc is helping me now with diagnosing the MG. I can't afford to just jump to another doctor right now like a pulmonologist. especially with my parents breathing down my back about the 3 doctors i did just see, not to mention the expensive larygnoscope.

I'm past a pulmonogolist, and sleep studies prove jack ****, other than ohh....you have trouble sleeping---tell me something i dont know!!! geesh

sorry but im venting here a bit.


and no baby aspirin still causes those same problems for me, like it doesn't react well to my body. yeah sorry about changing medicines quickly. it wasn't like i was going to change medicines quickly, i mostly concentrate on changing 1 or 2 at the most. I've been on the med merry go round with my psychiatrist for a while, and we're just getting down to the nitty gritty on meds.

hmm so nicknerd..this mouthguard was it a specific type of mouthguard?? or just one used for people that grind their teeth at night?

Hey,

He molded one for me, and yup, he said that I'm probably grinding my teeth at night and that's why my jaw was hurting so bad and was so stiff. I've heard that ones that you buy from the store can be just as effective, though, as long as it's comfortable, otherwise, you might be doing more harm...

By the way, are you still on seroquel or any other anti-psychotic? I'm sure that you already know this, but they can 'unmask' MG and other autoimmune diseases, especially thyroid problems.

P.S. I completely relate to your frustration. When multiple things are going on, and it's that tough to get a diagnosis, it sucks a lot!

Bruegger, I understand not wanting to see another doctor, however, when you say that you are having so much trouble breathing in without your "neck/back cracking," that concerns me. If you do have MG, it can be a very serious situation if you can't breathe well. Your chest wall muscles can become so weak that you will not be able to breathe, called a myasthenic crisis. You are new to all this, so you have to take it seriously.

Would it cost you money to see a pulmonologist if someone referred you to one? I will say again that if your breathing gets worse, you should go to the emergency room or call your neurologist.

And what pulmonologists do is important to someone with MG. They work with neurologists in a hospital setting if someone with MG gets worse. And they can do basic tests that show if your breathing is from a neuromuscular cause. Totally up to you what you do.

Annie

my breathing isnt that bad, its only when i try to take a deep breath, that the neck, back cracking happens, its pretty bad, but its not like my spine is breaking up as we speak. and heck ive lived with this for 7 years.

I have a PPO so i dont need a referral, would it cost less for a referral, im not sure. im going to hafta wait till about march when i have my appointment with my GP. if i want to go down further down this line.

Bruegger,

I have the exact same snapping/popping sound in my chest/back when I breathe at times. I've had this since I was 16, and I have no idea what it's from. I especially have it when standing or walking. I've went to the doctor about it when I was younger, but he didn't know what it was from either.

Nicky