Hi Johara. Welcome to the group!
Being diagnosed with MG is certainly life altering.
First of all, it does relieve most to find out what we have as many of us have had the problems for months or sometimes years before an accurate diagnosis is made.
Then we realize that we have a condition that will be with us the rest of our lives.
You already have that experience having lived with diabetes for most of your life.
So let's look at the good side first. You have a diagnosis; MG is treatable; MG will not shorten your life and you will be able to do most of the things you want to including having children.

When I first visited with my neurologist, she told me that my first few months would likely be the worst (I progressed rapidly from just head symptoms to whole body ones and ended up in the ER and hospital with breathing problems within a few weeks from diagnosis).
She said that 1. We use some rapid acting drug to get MG symptoms under control and that would be mestinon, prednisone and or IVIG (the infusion you are going to get).
Once these get the problems (breathing, vision, tiredness with anything I did, even typing a line on the computer) mostly gone, we work on the long term treatment of MG. Like your long term treatment with diabetes.
So my first several months were a problem (I didn't do IVIG which would have helped in the short term) and instead used a lot of mestinon (about eight 60mg pills per day taken as needed) and high doses of prednisone.
By 5 months or so, MG symptoms were gone, and then attempting to drop to the lowest prednisone dose needed as well as switch to another immune system suppresant -- Imuran. I tapered down for 6 months and it turned out I was one of the 15% that go into remissions for periods of time (4.6 years now for me).

I think your strategy will likely be IVIG monthly for maybe 6 months and Cellcept started soon with mestinon to get through daily problems (this is a guess based on what most of the folks here seem to get started with). Cellcept seems to be less of a problem long term, but can take up to a year to find out if it works.

The immediate downside: It gets worse before getting better; treatment takes months to be effective; the first year is almost always the worst; neurologists are very hard to see; most other doctors and people have no idea of what MG is; we appear to be normal and other folks are skeptical of our really being sick, treatment is a trial and error process etc.

My advice; Immediately enlist the help of your family. Tell your employer that you have MG and that the initial treatment (IVIG) can take a week a month out of your work schedule; see if you can temporarily move to some less active and more germ-free job at your location; find out about short term disability at your work; begin reading everything you can on reputable websites about MG and its treatment; figure out some way to contact your neurologist (and it should be one very experienced in MG patients) as needed. Also get your mestinon prescription to be "as needed" as it is a drug somewhat like aspirin -- you take it when you need it, not three times a day. My prescription was as needed up to eight 60mg pills per day. I found taking half a pill ery 2 hours worked for me when I needed to be active and less the rest of the time.

MG is a chronic condition. In the long run, you will live a normal life although, like diabetes, you will be on medications (unless you go into remission), but for most of us the first year is hardest. You cannot expect to live normally right now, but a year from now you should have those expectations. Right now you really can't expect to continue with all of your responsiblities, and if you try to do them you will get worse faster.
Sorry this is so long, but I still remember the huge adjustment I had to make in the first 6 months after diagnosis, before things began to smooth out and MG was not always the major thing on my mind.
One additional thing: When you get stablized, you will be told that a thymectomy is in your best interests. Research has shown that MG seems to be related to the thymus gland, sometimes it is enlarged, sometimes it has cancer, and sometimes it is normal, but the general plan for younger folks is to take it out. The results range from complete remission to lower amounts of medicine required and for some, not much change. It too takes maybe a year or so after surgery to see what happens. A recent long term study showed even for folks without thymus problems it helps.

Good Luck
Russ

Hi Russ
Thank you so much for the reply to my post and the encouraging words. I am glad to hear you are in remission and hope it stays that way. I think currently i am overwhelmed and just need to take a step back and process everything.
Can i ask if you had a thymectomy? And if you did what was your experience regarding this?
i seem to be having a good response to Mestinon currently. We are waiting for the AchR antibody result as i think most medical aids here in South Africa require that for authorisation of the initial IVIG.

Johara, welcome to the group. Sorry to hear your MG is a reality. I too have diabetes and suffer the effects of prednisone. I must say that the blood sugar issue is more controllable than the MG is without prednisone. When I went from 5mg to 20 mg I sure started to feel better. Of course, now I have to eat a lot of protein's and almost no carbs. I was just on metformin, but had to add glipizide to the mix.

Hi wskimball. Thank you for the response. I'm afraid to be on prednisone because I did take it previously at very low doses (for something else) and my glucose readings went haywire. Were you even on any other immunosuppressants? In comparison does prednisone seem to give a better response?

They don't offer thymectomy to older folks like me unless we have an abnormal one. Generally this has been for folks in the 50s or younger and I was 65 at the time. I had the advantage of being retired and so not nearly so much pressure as younger folks.
It is not a good idea to delay with MG, as by the time the symptoms are noticeable, something like 80% of our muscle receptors are already damaged or destroyed or blocked, and although they grow back very fast when the attack is removed (for example with IVIG), we are very close to hospitalization when diagnosed.

Is it normal to feel incredibly tired on the Mestinon? I wasn't this tired before I started it. Probably not the best idea for me to be stressing right now, but I just realised that my medical insurance won't pay for chronic treatment of MG. I'm not sure if there's any members on here from South Africa who could help with advice regarding medical aids?

I don't think the tiredness is from mestinon, but from MG itself. I took about 60 mg eight times a day when I was at my worst, and each time I took it, about 30 minutes later I started feeling better and it lasted for about 3 hours before tapering off and getting tired again. It just helps with the symptoms. Chronic treatment of MG , for most of us, is just a daily pill. In my case it was prednisone, with mestinon to smooth out the weaker days. Prednisone is very inexpensive. The alternative "normal" drugs are azathioprine (Imuran) and Cellcept (mycophenolate mofetil) and both have generic forms so are likely to be covered under insurance with a modest copay.
Mestinon acts differently with some folks so we have to take more or less and figure that out for ourselves. However it is really just a stopgap until we get on an immune suppressing treatment.
Good Luck Russ

Hi Johara,
Sorry to hear you have MG . It’s pretty scary at first . I had a thymectomy a year ago at age 50 but I also had a thymoma.
I felt really bad for a few months but then things gradually improved . Now I’m almost symptom free and off mestinon and prednisone . Still on imuran but hoping I can get off that someday.
I’m not sure if the thymectomy or the other meds made me feel better, or a combo of all.
I hope you get started with treatment soon so you can get better ! Hang in there , there’s hope!
,

Thank you Rhanson and Lynn52266. Please keep me in your prayers

Rhanson, you said, "Also get your mestinon prescription to be "as needed" as it is a drug somewhat like aspirin -- you take it when you need it, not three times a day." My neurologist also said I had to fiddle around with it to see how it works for me. Is that what you felt worked best for you? Taking it like aspirin? So if I have a lot of energy in the morning but am wiped out by 5:00, perhaps that's when I should take it? I've stopped and started it several times. It gives me bad cramps and regular visits to the toity. I'm not quite sure how to use it. Johara, I was diagnosed in June. What a life altering thing this MG is. Hang in there!

Johara, I understand the blood sugar going haywire but that can be controlled. I am keeping my sugar in the 101-150 range with diet, and metformin and glipizide. I am hoping to go up on the prednisone as I am doing better that without it. Just gotta stay away from bagels, donuts and lots of water.

Calensariel it really is a life altering disease, still can't believe I have it. The Mestinon also gives me bad abdominal cramps but I'm on Nexium 40mg daily which helps with the GI side effects and I noticed when I take it with some food it isn't as bad.
Wskimball I asked my Neuro about the long term plan and he said he wants to admit me for a 5 day IVIG pulse (which i stated yesterday after 1.5 days of fighting with my medical insurance and threatening legal action. Though I'm sure they will still give me a hard time about it) and then 2-3 monthly IVIG pulses to try and induce remission. He said he'll avoid steroids because of the diabetes and immunosuppressants because of my work environment.
Last night had a slight reaction to the IVIG which was a bit scary, but the infusion was going too fast and thankfully once they stopped it for a while it stopped