Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
i have been recently diagnosed as having myathenia gravis because of some eye issues but after reading about the disease I think I may have been having issues for quite some time. I feel extremely tired all the time, sometimes have difficulty swallowing, to the point that I have passed out briefly. have any of you had similar experiences?
First -- for most of us, we are pretty far into MG before diagnosis, and generally we get even worse before treatment gets underway and improvement starts. I ended up in the hospital early on, but with treatment (prednisone and Mestinon--pyridostigmine), in about 4 months I was feeling decent again and soon able to be active and living almost normally.
So, treatment needs to begin sooner rather than later. Most of the time we get started on Mestinon (generic is pyridostigmine) and that works to help with daily functionality -- take a pill, 30 minutes later you feel better and it lasts for a few hours. We also have to have immune suppression -- as what is happening is our body is churning out bad antibodies that block and kill off muscle receptors that allow nerves to tell muscles to act. Most of us start on prednisone as a fast acting medication (weeks to months) and then switch to something else long term that is less bothersome.
If you are quite bad, you may get an infusion called IVIG that seems to work in a few days and last a few weeks for improvement. It is very costly and insurance is not eager to cover it Another blood treatment we call "PLEX" is a blood filtering process that is alos expensive, but works rapidly too.
I think the first year is the toughest as we get a treatment plan figured out that works for us. Each of us is different. Then ongoing we take enough immune suppression to keep MG at a minimum while still allowing our immune system to work. A live long balancing act.
The usual numbers are about 80% of MG folks get things figured out with standard treatments and 20% have much more difficulty finding a treatment they can tolerate and works. Most folks do well with treatment, and unlike MS or Parkinsons, our muscle receptor cells grow back and we can be fully functional again if treated early and ongoing.
If you are younger, or if you have an enlarged thymus gland, you treatment will probably include the recommendation to have your thymus gland removed. Research shows that helps folks with MG, sometimes putting them into remission and sometimes lowering the medications needed The surgery is not claimed to be a cure.
The prognosis is good. The treatment plan somewhat complicated and somewhat trial and error. And some of us have to adapt to a less active life.
My strategy was hit it hard with prednisone early on to get my life back -- about 4-5 months and I was almost normal. Then plan a long term strategy with something other than prednisone (Cellcept or Imuran seemed reasonable alternatives). And I also started planning for a less active lifestyle just in case.
I also read everything on https://myasthenia.org/ so I could understand my disease, my treatment possibilities, and my likely future. I also joined this group and asked lots of questions and read the old posts (searched them for topics). I felt that being knowledgeable was the best way I could participate in a disease that likely would be with me the rest of my life and require ongoing medicine balancing that I would need to help my doctor do.
By the way, at about 5 months into prednisone treatment, I felt better than I had for may years -- which told me I probably had MG longer than I had realized too.
Good Luck
Russ
As for Prednisone, it is probably the medication of choice for nearly all of us in the early days. It does have drawbacks, but they are well known and as long as your doctor is aware of your concerns... with that said, it is the case that we all need a really good relationship with our doctors, especially so if we have MG.
The other thing to add here is that, when it comes to MG, few of us follow the same path and therefore be careful what you read and how you interpret it. Most of us try to stay away from being prescriptive and so we should!
Take care
Peter
Normally we start in weak condition, find a treatment that works for us and get it going early so we don't get much worse before we improve. Usually we start with prednisone and Mestinon, but more folks are started with IVIG and Mestinon for quick improvement with another pill for long term treatment. All depends on your doctor, your level of functioning and your insurance.
There are not ongoing tests used to determine how you are doing other than your interactions with your neuro. The neuro asks you how you are doing and then adjusts or prescribes medication levels. You need to have a neuro experienced with MG, and one you can talk to and contact easily (get the neuro's support contact person enlisted to eas the communication channel). At first you need to be followed closely, and if all goes well, not so much later.
Prednisone can push us into type 2 diabetes. It tends to raise our blood sugar levels. However, I think if you already have diabetes, then you likely will just have to adjust your treatment for the prednisone effect.
My mother was on prednisone at about 10-12 mg per day for 25 years and it did push her into type 2 diabetes, but she was able to do fine (passed away in her sleep at home at age 91) adjusting the Metformin and later insulin.
Usually prednisone is the first medicine and we switch later. Cellcept and Imuran take much longer to work than prednisone -- maybe a year vs a few weeks to months.
Good Luck
Russ
My diagnosis was told to me in a 3 minute phone call from neurologist. Too caught off guard to ask questions. Now I've tried to get an in person appointment with the neurologists, and they set me almost 3 months out (still a month to go almost). So I have never had a substantive conversation with the Dr., and all I know is what I see on the internet. Crappy disease, isn't it?
Welcome to the group!
MG is a rare disease and I think all of us are in the dark when we hear the diagnosis. Most of us don't know anyone else who has the disease and so feel like we are on our own.
I found a lot of advice, support and information from others on this forum and useful information on the internet.
There are some youtube videos that explain the cause --
https://www.youtube.com/watch?v=il3vvxNpls8 is OK
What you should know is that treatment is pretty standard
1. starting with pyridostigmine (Mestinon) to help with symptoms A pill takes effect in about 30 minutes and lasts for a few hours and gives a temporary boost
2. Usually if Mestinon is not sufficient, some kind of immune system suppressant is used. As our problem is our immune system making antibodies that attack our own neuro-muscular junction, immune suppression slows or stops those from being produced and when the attack is stopped, our muscle receptors grow back very fast. Of course these immune suppression drugs have side effects and some take months to work.
Are you on any medicine yet? Generally we are not diagnosed until MG has progressed significantly and so treatment should be started quickly. Remember, Mestinon does not stop the progression of MG, and so if it doesn't work, you should insist on other treatment soon.
The initial treatment now often is IVIG -- an infusion of blood products from others That is generally is quite rapid in working, but requires the infusion often maybe every few weeks, and is extremely expensive so insurance may not cover it until other options are tried.
I started on Mestinon and prednisone. It took me few months on them to get back to mostly normal functioning including eyse and strength.
MG is treatable; most folks figure out a treatment that works for them and get on with their lives, although on medicine About 15% have more trouble and struggle to find something that works for them.
If you have questions, create a new post and ask them.
By the way, in the US (we have members from other countries), one route to being seen sooner by a neurologist is to go to the emergency room of a large medical institution like a University o or large place as they have neurologists available.
Another way is to see your family doctor, show them the diagnosis and get them to start treatment. They can call the neurologist and ask what to start with.
We do not have months away from diagnosis to wait to get on treatment. I was diagnosed and within a month in the hospital with what we call a "crisis" -- problem breathing. It was because my treatment was not started fast enough.
Good Luck
Russ
Being Patient is not one of my strengths, but is often what my Neuro says I should practice.
Having been diagnosed about a year and a half ago, I am still dealing with IVIGs, Mestinon, Prednisdone and Imuran. Currently weaning off of Prednisdone, I would consider my condition as being mostly stable. I do not seem to be getting any worse but do not see me as getting any better. Double vision is gone and my eye lid droop comes and goes. Swallowing is OK now - mostly but the biggest challenge I have is the constant feeling of fatigue. This disease has been life changing. I often wonder if I will be one of the lucky ones that see Remission, for a week or month or year - many do not so I am not holding my breath.
I have done quite a bit of reading here and posted numerous questions and am pleased that it was/is here for me to learn more about this disease and to ask those questions.
Good luck,
Scott
Sorry to hear your diagnosis but as others have mentioned this seems like a very helpful group of people able to offer support and advice.
I have been semi diagnosed with MG in that the nerve test was suggestive but not positive for MG and all blood tests and scans have not shown anything other than that I am short on all immunoglobulin types and my protein kinaise is higher than they would expect.
All I know is that the first time I took mestinon it was like a miracle. For the first time in many years I could see properly and all the symptoms I had of difficulty talking, swallowing, tiredness and breathing were all improved. I too think I have had it for many years.
I have also been a Type 1 diabetic for 42 years and I have had Graves Disease (thyroid issues) which are autoimmune related. I had a catch up with my diabetic consultant just before Christmas and told her about the possible MG. Luckily she had previously worked with MG before so she appreciated that Prednisdone could be an issue for diabetics and she said she would work closely on that with me should the need arise. Obviously I don't know what sort of insulin you are on - I am on Lantus + novorapid which allows some freedom of adjustment depending on results and I use the freestyle libre to keep track of blood sugar level. I am hoping therefore that I will be ok with the treatment if I am given it using the adjustable insulin and the support of the diabetic team at my local hospital (I am UK based).
My biggest issue right now is that the Mestinon is becoming less effective as time goes on so I got permission from my GP to increase the dose - that has helped but I really need an appointment with my Neurologist to really deal with this and that is not due (despite my trying) until the end of February - particularly now we are all back in lockdown again.
Overall it seems very unfair that live has dealt us a rough deal with Diabetes and MG but I guess worse things could happen and I always try to look at these things philosophically and with a sense of humour to get me through. If I can offer any help then please send me a message and I will gladly help/support if I can.
Best Wishes
Chris
I wish everyone good luck with MG treatment.
Sorry you are still not diagnosed. Being in bad health with no one able to figure out what is wrong must be terrible.
Although i have a handful of things wrong with me, they are diagnosed and the medicine I take makes my life pretty normal, so I am very lucky.
Hope 2021 brings relief and you get better.
For breathing there are some things that help -- oxygen if you are not getting enougn and the sleep apnea breathing machines that help push the air in and let it come out. I used one to help me when I had breathing problems -- I used it in the daytime and overnight. When I got weak breathing, I could put it on and get relief and rested up in 15-2o minutes.
You could ask your doctor to try on a rental basis -- not for sleep apnea but for breathing assistance. I just got my second one having worn out the first one over 8 years. Now i just use it at night.
Good Luck
Russ
In May of 2019 I had a 3 month episode of double vision. My eye doc suspected MG but said it was too early to be sure. They ran an MRI on my noggin to check for a TIA plus a a cat scan of my chest to check the thymus.
I had two additional double vision episodes that each lasted about 6 weeks.
Additionally, and coincidentally I discovered I had high blood calcium numbers for the prior 5 years but due to some doctor retirements and a hospital change no one picked up on it. It was called hyper parathyroid which removes calcium from your bones. In my case it was genetic since my older brother had the same condition.
In December of that year my Endocrinologist did a bone scan and ordered surgery to remove 2 of the four parathyroid glands which occurred on March 13 2020.
After surgery I was advised to take 3,000 milligrams of calcium citrate a day for 30 days, then 2,000 for 30 days then reduce to 1,000 per day which is the normal recommended daily amount. I was also told to take 1,000 mg of vitamin d3 which is required for calcium to be absorbed. All during this period I no no vision issues. To make a long story short, 5 days after I lowered the calcium to 1,000 my MG went off like a bomb and I ended up in the ER because I couldn’t t breathe. I was then put on MESTINON which certainly helped but I struggled for the rest of the summer. Weak legs, swallowing difficulty, etc etc. in September I ended up in the hospital for 5 days because I couldn’t swallow...at all.
At that time when I looked back and thought to myself, what the hell changed?? The only obvious thing was the calcium reduction. I asked the attending neurologist in the hospital and he thought it was interesting but that was it. I also saw a doctor at Mayo and he kind of blew it off. My personal neurologist was also interested.
On December 1 I went to see my neurologist and told her everyone thinks I’m crazy with this calcium theory.
She handed me a piece of paper and said “I don’t think you’re crazy”. She had gone online and found a paper in the JAMA (Journal of the American Medical Asso.) “ from 1969 titled “Role of Calcium in Myasthenia Gravis”. In the summary, it said 6 of 10 MG patients when injected with calcium reported feeling “stronger”. I also found an article on my own from National Institute of Health dated 1975. It states” The decreased calcium has an adverse effect of skeletal muscle function, especially in patients with Myasthenia Gravis”.
Now. If you look up the role of calcium it says things like “necessary for muscle contraction”, “enhances nerve muscle function” ( which sounds like what MESTINON does.
I have since increased my calcium intake to 2000 mg/ day and feel great...stronger, more endurance, doing 1mile per day on treadmill.etc etc.I’m still on 4 MESTINON per day but the little ups and downs are gone, especially later in the day. I got a blessing to do so from both my neurologist and endocrinologist who monitors my calcium levels.
So take this for what it is, but if you decide to try this talk to your doctor first. If you’re someone with kidney stone issues or even some heart issues, please consult.
I take calcium citrate supplements ( which are less binding) and use 6/200 mg caplets per day...which yields 1,200 mg as a base. I take them 2 in the morning, two after lunch and two in the evening) . Also look at all the stuff in your kitchen, refrigerator, and cupboards since there’s calcium in almost everything. Fortified juices, cereal, almonds, fiber bars. Plus multivitamins, (mine contains calcium and the necessary D3) I make a list and add subtract caplets to maintain the total. I’m a big skim milk drinker so I am careful. I’ve theorized that little day to day variations in calcium don’t matter but when you go below some “threshold “ for a period of time the MG overwhelms.
I truly hope you may find this helpful as I know a number of you are and have been feeling awful at times. I hope this helps. Please contact me directly at
calciumguy36@gmail.com if you need more info on how I manage things and PLEASE let me know if it helps.
CHEESEHEAD