[susan_mela]

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.

[AnnieB3]

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!


Annie

[susan_mela]

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?

Originally Posted by AnnieB3

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!


Annie

[MGSpouse]

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

[susan_mela]

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.

[MGSpouse]

Originally Posted by susan_mela

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

[susan_mela]

My husband and I talked, and we recall checking back in with my neurologist a week after I started Mestinon. This would seem to indicate thereÂ’s not much, if any induction time.

Mestinon does not work for everyone. For some it does not work as well as for others. You seem to indicate that a bit of success is being had. I know folks for whom it does nothing. Being able to chew again does sound like an improvement, but was it a natural fluctuation or the Mestinon? Are you seeing improvement within 15 minutes of dose? You should. Is it obviously wearing off long before the next dose is due? That might indicate needing more. There are nuances. A doctor would be more knowledgable as to these.

If your wife had gall-stones, and still has her gall bladder, could this still be a problem? A sick gall bladder is no fun and will cause no end of digestive problems.

60 mg 3x a day is just under half of the maximum IÂ’ve ever taken with generalized MG, even before IVIG treatment, if that helps. ??? This will vary from patient to patient. Just offering another case.

MG does make you feel crappy. No way around it.

As for the pain, I was always suspicious about the “MG does not cause pain” statement. As for my own situation, I’ve had pain from muscle spasms for at least a year now. These have developed further, and indeed did not have to do with MG, and we are hoping it’s an IVIG by-product (long story), not a new diagnosis. If it is a new diagnosis, it’s a BAD one. Hoping the IVIG is causing a false positive.

If a strong muscle is being overused to compensate for others not working, normal over-stressing kind of pain can occur. Then itÂ’s time to rest, or stop. I will also admit to having a vaguely sore sternum perimeter when my breathing was extremely weak during both cases of crisis. Nobody has really made a big deal about that. It was not an extreme painÂ… more like a vague soreness of fatigue. ER doctors will not understand this. Unfortunately we need to learn doctor speak for such things. Otherwise, all (haha) MG is involves the weakening of muscles in degrees down to complete non-functioning. ThatÂ’s it. Lock jaw seems like the anti-thesis of this to me.

I know all of this is very scary and beyond aggravating, especially when you feel so helpless on the part of your spouse. It takes a lot of patience and a little hope to not panic and learn to watch patterns, sensitivities, and in some ways learn to reroute how you do things to lesson symptoms that way. Please also be aware of stress. It is a huge symptom trigger. I really did not play around on my own with increasing and decreasing Mestinon at first, although there were fluctuations. Even now, I am very cautious. While I was getting used to this, lifestyle was focus #2.