Newbie to Forum
 

Hey - to introduce myself - I was officially diagnosed in 09 after probably having had MG for at least 13 years. I had some Barre similar virus in High School for a year, which may have been related. See ** blog for my diagnosis story, and hopefully other updates.

I'm joining now, because I have become isolated through not driving, having energy to join classes out of house, and not walking well in general. I thankfully have a good doctor, but after a very rough year since starting IVIG, I could really use contact with others who know what having the disease is like. I am thankful not to have had further crisis since a year ago, but my quality of life has never gotten back up it's to pre-crisis state.

Hi, Susan. Welcome! I read your story. Sad to say that many people go through a similar process with MG. I'm sorry you went through all of that!

I know there are some Facebook forums, but I'm not on FB. Can someone here direct Susan to those groups? There are ones I've looked at that are not current, don't have good info, and are not support sites.

Once someone has a crisis, it takes longer to recover, especially without the right meds. Does IVIG work for you? Are you still on Mestinon? Any other drugs? You might need an immunosuppressant.

For those of us who can't live a "normal" life, being isolated really sucks! I'm glad you are using creativity to keep yourself engaged! That works for me too. But finding others with MG to speak to helps a lot.

Do you take naps? That can help with strength as well. Staying cool while you do anything, such as having a desktop fan blowing, is good too. You obviously know, after reading your story, what hot weather does to us!

Have you been tested for a B12 deficiency? Many people have that and a vitamin D deficiency. Doctors should know that many of us have more than one thing wrong! ;)

I'm glad you've found a balance in your life. But you may need more care. I hope your neuro and you will discuss if the treatments you're on are good enough. Take care!

:grouphug:
Annie

Thanks
 

Thank you so much, Annie. I hope my site seems a worthy direction to keep headed in. I was just penning a new post about what happens during IVIG treatments, which is my current 3 week regimen plus Mestinon. I have not been given steroids due to blood sugar and depression issues. CellCept made me have stomach bleeds and fueled great anxiety. Doctors appointment is about 2 weeks away, so we'll see what happens, if anything. I try to stay thankful that I am not bed-ridden. The problem has been multiplied by continuous pelvic floor spasms which seem to get better the stronger I am. Between neurology and urology coming up, hopefully at least the pain can be alleviated.

Have you by any chance heard anything about high dose Vitamin D treatments?

Hello fellow newbie!
 

Hello Susan,

Welcome - I am also a newbie (just signed up yesterday). I joined because my wife was recently diagnosed. Fortunately her diagnosis came shortly after her first symptoms, in less than six months. That was only due to a very sharp neurologist who held an ice pack to her affected eye and diagnosed her on the spot the old-fashioned way.

It cannot be said enough how critical the quality of your doctors is.

Coincidentally, my wife and I are also jewelry makers. Hand-crafted niche pieces. You can see the brand-new site I just finished creating if you like at **
It is pretty empty at the moment as far as posts are concerned and mostly leads to our Etsy shop, but I'm heading there to begin posting as soon as I finish this message.

I really liked your Skull with Red Eyes pendant. I am a big fan of skulls, so it's my weak spot. Your painting skills are also very impressive. Not a skill I possess. The canal painting is stunning.

We are also working through the MG journey, and right now my main concern is the severe stomach and intestinal cramps and pain that my wife is suffering from due to the Mestinon. I read that you have also had problems in that area among others. I just submitted a post (awaiting approval) to see what others had to offer for relief of acute stomach pain, as I just can't bear to see her suffer so much. It is really killing me, and I can't stand feeling helpless. I usually feel like smashing something! Not very mature, I suppose.

I think this forum will really help us. Any journey, good or bad, is made easier when you are not in it alone. I haven't read through your IVIG post, but it is something her doctor is considering. I have also inferred from research that the pain is mostly confined to the first six months of taking Mestinon or other similar antibody-blockers. But if this much pain is expected to last for up to six months, I cannot sit idly and do nothing.

Anyway, wanted to say HI! to a fellow jeweler and let you know that your blog is already helping people. I'm going to go read your experience with IVIG because that may be on our agenda as well. And I intend to share whatever knowledge with the group as we plod along, hopefully helping others along the way...

I would advise you to really task your doctor to address your lack of energy. That may be the thing that effects your life the most, and there has to be a solution. If you already have, then good for you. It's your life and you should be in charge.

Keep the faith and all the best to you,
Daniel

Welcome, wow, and good luck!
 

Hi Daniel,

First, thank you *very* much for your kind words regarding my site and work. I am still working on decent art for the IVIG post, but it has been composed. I'll post here when it's up (hopefully tomorrow).

Of course I was blown away by your shop and loved the site too. Steampunk is so fun, and I love your quality designs. Congratulations on your successs. Ohhhhh.... to succeed on Etsy! The holy grail for artisans and jewelers.

Thank god for a pro-active and observant doctor! Sadly, I have no tips for the stomach issues. My nurse has seen folks really have a time with such sensitivity. I thankfully have never been sensitive to Mestinon. You might want to keep your doctor aware, because it could be side effects, but too much mestinon can also cause issues..... It's a tricky medicine that way, and it's probably better to report any ickiness until you learn your wife's own patterns of sensitivity. I'm not saying that *is* happening, but I would call your physician. Other than erratic digestion during IVIG, my bad experience was with Cellcept. I was just flat out getting GI bleeds and pain from that. I know it causes extreme diahhrea in unlucky people. Upcoming blog entry topic, partially written.

Sending strength out to your wife (literally) and you! Welcome aboard.

Susan,

I appreciate your advice. I was privately concerned that there may be and over-dosage issue, as I've read that this type of severe pain is a symptom of too much Mestinon. I am definitely going to follow-up with her doctor. Even if he maintains the same regimen, she should not have to endure such discomfort.

I know Cellcept is an immuno-suppressant but maybe there is some similarity with Mestinon that causes her a similar reaction to your experience? I know I could go read Wikipedia and learn about the molecular structures of each, but really I just need to call the doctor and tell him what's going on. She mentioned it at her last appointment, but she hates the idea of taking one medicine to deal with the side effects of another medicine.

She is a diabetic also, and takes meds for cholesterol and mild high blood pressure, plus D3 and B12 and 80mg aspirin, so she has a full meal of meds and resists taking more.

But in my mind, her reaction is far greater than what it should be and probably what is safe. Your experience with GI bleeding sounds serious, worth terminating the medicine immediately, and likely where she may be headed if she keeps irritating her bowel as she does now.

THANK YOU so much for your kind words about our work. We actually used to be much more successful on Etsy than we are now. It is flooded with copy-cats and price cutters making it very much like eBay :( But we're hoping that ramping up our website and social media profiles will revive the traffic to our store.

How have your sales been? Do you sell on other platforms that work well for you? It is immediately apparent that you have an artist's touch, which is one of those things that you either have or you don't. You have been blessed with this talent. But many artists don't put enough effort into promoting themselves (too busy working on their art, of course!), so I'm curious about your approach?

Thanks so much for your support. I can use all of the positive energy I can get. And, of course, I'm sending it right back to you, hoping that you gain more strength every day and find your way back to your former self.

I just watched (again) the Frida Kahlo movie and to watch her paint while laying in bed in a full body cast, well it's inspiring to say the least. So whatever you do, don't ever stop creating, even if it's some sketches while you're taking time to relax. Creating art is obviously one of those things you were meant to do.

Wishing you a great coming day (it's almost 3:00 am here) and an even better weekend ahead.

Best,
Daniel

Posted!
 

Hey Daniel,

One other thing re: Mestinon that I hesitated to say, but my husband has encouraged me to add. In that the medicine has that "too much could make your symptoms act worse" aspect, we have noticed that my doctor always *seems* to ask whether I can feel the strength improvement actually actively wearing off before the 4 hours are over when we consider upping the dose. That's all by way of learning your wife's symptoms, sensitivites, and patterns....

That blog post is up with minimal outgoing links or graphics, BUT the info is there presently: **... I'm not able to post a link until a few more posts in general here. :)
Will DM you about site and Etsy.

Hi Susan!

I hope you're having a good start to the week and got some good rest this past weekend. Your husband's observations are duly noted. In fact, there are two "too much" effects that have drawn my suspicion:

1. I have also read that too much Mestinon can actually aggravate existing symptoms, or make symptoms that were so mild you didn't even notice them suddenly become a problem, which definitely has happened.
   
2. After some more research, I found some drug research results that indicated the stomach and intestinal pain of such severity indicated an over-dosage.

So two nights ago, I convinced my wife to go back down to the 1/2 tablet 3x's a day that the doctor started her on for one week. And PRESTO! Her severe pain basically went away. I was actually nervous that it wouldn't, simply because her intestines might have become so irritated that the presence of ANY of the Mestinon would bother her. I was thinking that she might need a few days off of it completely to allow the lining of her bowels to heal. But by going back down to 30mg, her suffering all but went away.

She still has much rumbling and gas, but not the severe cramping and pain. So I am very glad I was able to convince her to drop the dosage. She will eventually have to take more to help her vision and her muscle weakness, but maybe more time for her body to get used to the medicine may help.

Also, in another post one person said that she is lactose intolerant, and one of the fillers they use in Mestinon is lactose, for some reason? She takes some Lactaid (not even a full tab) and that helps her tremendously, along with a full meal with each pill. I think the lactose issue may be right on the nose. So many women develop Lactose Intolerance of varying degrees, esp. after menopause, and along with IBS, Lactose Intolerance is quite likely something from which she suffers, so Lactaid my just be the ticket.

I read your IVIG post - Thank You for that world of information. It sounds as though it gets more tolerable over time. I was confused by the frequency - is it once every three weeks? We're not there yet, but IVIG my be down the road, depending on if my wife responds to the Mestinon. So far, even at 60mg 3x's a day, she wasn't noticing much of an improvement and the improvement of her vision at 60mg seemed to actually go away after a few days before going back to 30mg. We'll have to see how it is over time.

That's one thing I could never get a straight answer about with the doctor, when should she notice some improvement with her eyesight and muscle weakness? Immediately? After a week? A month? I really have no idea. What I do know is that there has been virtually no improvement with the Mestinon, but again as your husband said, it might be because she was taking too much too soon (thinking of a Grateful Dead song here...).

Also, just so you should know, there is something weird about your WP blog. If you click your logo, which is supposed to take you to the root of your site link, something tries to download. It doesn't appear to be a valid file of any kind, but since the browser doesn't know what it's linking to, it instead treats it as a file download as opposed to a page. I'm using Windows 7 Ultimate Edition and Firefox v48 on this laptop. I think I am logged into WordPress at the moment, so I'll have to go to another PC where I'm not logged in to WP and try it to see if the same thing happens, but I thought you should know and check it out.

Hoping all is well on your end!

Best,
Daniel

Mestinon schmestinon....
 

Hi again, Daniel (and wife),

The main factor I look for in the Mestinon too much vs normal side effects area is whether I can feel *weakness* symptoms worsening as the medicine gets towards new dose time (a sign you are needing the dose), ie can I feel the medicine wear off to negative *strength* effect. I always liken it to feeling like I am "wilting." I do know that years ago I was indeed taking too much, before I knew this judgement test. I became disoriented, with brain fog, and was even drooling a bit.

The feeling of Mestinon kicking in properly on non-ocular muscles is a bit like feeling a tire be inflated when it was previously useless and flat. That wilted plant gets water and perks up again. Droopy eyelids should pop open when the drug is 100 effective. In all honesty, my vision has not been normal for so long that I compensate somehow now with the minimal-spacing halo-ish double vision it's seemingly stuck at, which I've had as long as I can remember. I did not even *realize* this until after my crisis when I started asking a lot of questions to make sure I was correctly answering the "double vision" question. Even if straight ahead is okay, up, down, or peripheral is wonky. If it does get to "drunk double vision" I still don't necessarily mentally realize it until I'm knocking glasses off of shelves. From pictures, I know I had a droopy eyelid as far as 22 years back.

Mestinon starts working quickly if you are responding properly. Within 15 minutes, your wife should be seeing some improvement. I tend to get maximum results in a half hour at most. Still, be careful, because 15 minutes / half hour can be crucial with this disease. Maximum results does not mean "full normal strength" for many patients. Even with Mestinon AND IVIG I have had about 9 days in the last year that I would possibly categorize as anywhere near "normal" non-ocular strength. Then, when this point arrives, great care must be taken not to do too much at once with your new found super power. One must also remain vigilant as to returning symptoms, because they often do. Despite all of this, I celebrate that I am not bedridden.

As for initial effect after starting treatment... I do remember having my first follow up neuro appointment post induction after about 2 weeks, so I can summize that it should be kicking in by then.... ???? Everything was so new to me at that point, that factor got lost in the haze.

Once again, pls be sure to run the Lactose theory by your doctor.

Thank you for your input re: my IVIG post. :) Had you gotten the DM I sent, re: own site vs Etsy? That website has been absolute hell, because I am too stubborn to use a template. Most were too generic for me, or are just not good for my own site aims. Without my own models, or money to buy a lot of my own printed merch, I have to get the site looking interesting somehow. I felt a template wasn't going to do it. Wordpress.org platform is a LOT more involved that my ISP salesperson admitted (AVOID GODADDY!!!!). Keeping up with the purely technical IT kind of end has sapped so much of my time and energy that I should have for creating. Never ending. Thanks for letting me know about the logo link. That's probably a leftover side effect of using a plug-in at one point that is pervasive in the WordPress world, but really causes loads of problems. Also the reason why I'm using PayPal shopping cart and not a bigger "store" plug-in (like WooCommerce). I'll look into the bug. Currently working on setting up art vs MG posts as separate base blog landing pages.

LMK if direct messages are even coming through.... probably a better platform for business topics (which I am glad to have an open dialogue about). :)

Hi Susan,

It's so funny... I am really on-the-fence about the possibility of excessive dosage. Part of it is that this is all so new to me that I don't fully trust my judgement, but something feels "off".

I really appreciate your descriptions of how the Mestinon interacts with your strength and muscles. You help me begin to figure out what to look for, what to expect and zero-in on where the tipping point is. That's really helpful.

She doesn't have too many strength issues (yet), but I've been keeping a close eye and taking mental notes. About a week ago she was complaining about her neck being sore (she thought she had slept wrong), and I'm like, Bingo! That's a symptom. Then one night after a particularly long day, she said she had a pain in her chest and felt as though she couldn't draw a full breath, and again I thought, Bingo! That's a symptom.

Prior to this, her main issues were with vision and lock jaw. As art lovers, she said that the best way to describe her vision problems was that, aside from one side of her vision being lower than the other, things looked "cubist", like a Picasso painting. That has to be really rough to deal with. And of course, your brain tries to compensate as best it can, but the problem really reveals itself when it comes to depth-perception. I can see her struggling and of course it breaks my heart.

For several weeks she just gave up on most foods simply because she couldn't chew (masticate) virtually anything. Between this condition and previously having Gall Stones, she has lost a mountain of weight. Though the weight loss is beneficial (she is a diabetic), the quickness and the causes for it have only come from suffering, which I wouldn't wish on anyone.

Right now it would be really great to know if the Mestinon is helping, or even if it is the right amount, but with all of these side-effects it's virtually impossible to get a read on it. After I told her to cut back to a half a tablet, the severe stomach cramps went away and she actually had an appetite, which was great to see. She didn't seem to get much benefit from the meds - her vision was maybe a little improved, but not much. She seemed to be able to chew the food she suddenly craved, but the things she ate weren't too challenging to begin with, so??

Now she's back to a full tab and she says her vision is perhaps a bit better, but I see that she's beginning to feel sick from it again, with a sharp gut ache. We talked with her doc and he prescribed Hyoscyamine Sulfate, which is for IBS. I just picked it up today so we'll see if it helps.

It's just weird, when she takes the Mestinon, she just seems to feel lousy. That's the best way I can put it. It doesn't seem to do much for her symptoms, if so it's incremental, but overall she just feels like crap. And since I don't know, I'm not sure if that's because she's taking too much (60mg - 3x's/day) or if she is still just getting used to the medicine? And not knowing is driving me mad.

When I convinced her to go down to a half-tab she got her appetite back and really seemed to have a spring in her step. Now at a full tab I see her sliding back to a miserable state. And everyone is telling us that she just needs to give it time for her to adapt to the medicine.

So that's where we're at, and I'm left banging my head against the wall until either she actually does "adapt" or we realize that something isn't right.

By the way, there is no evidence of your DM here on the site, but I did see it in my email since I have notifications turned on, and I did read some of your message in my email and thought, "I'll read this on the site where I can respond" but now I'm here and the message is NOT! So I'm going to go back to my other PC where my email is loaded and copy that text over here:

I am going to respond via DM, so if you DON'T see a message from me then it isn't working for some reason, in which case I can email it or whatever works for you. We could discuss on here although I think it's a bit off-topic for the forum and I don't want to disrespect that, but I do have thoughts about what I've read so far and look forward to comparing notes. I may even have some tools that might be helpful, or perhaps you've already trod the well-worn path of WordPress and what I have to offer is old news. But do check your messages in a bit and see if mine made it through...

As always, wishing you good health and the strength of a hundred teenagers,
Daniel