Hi Camy,

I heard on one of the podcast on the mgfa website that with mg, expect the first 2 years to be a rollar coaster emotionally and physically. It takes awhile to figure out which treatments work best and to learn to live with this crazy disease. I'm glad you are seeing a councelor. Are there any local mgfa support groups near you? Are you on anti depressants? I've found they have helped me a lot. I'm sure it must be extra difficult being so young. Just remember you are not alone!

hang in there!

Judith

Hi Camybaby, Glad you found us and know your aren't alone.
I think most of us here are in the process of or have gone through the stages of loss and it's perfectly normal to have the feelings you are having. The hard part is to pick yourself up, adapt to your symptoms and enjoy this one life we are all given. I was diagnosed 18 months ago so I am still learning how to deal and will always be learning as this is not a static disease. This disease has taught me many things for which in am thankful, some I should have learned a long time ago. Everyday is a new revelation. A few lessons I have learned are:
That everyone and I mean everyone has their own problems, their own handicaps, their own disease. That this disease is not my fault but I have the ability and duty to educate myself on MG and do everything in my power to treat it so I can live my life to the fullest. That it is okay to question my doctors and that I have the right to change physicians and find the best one for me. That the doctor/patient relationship is a partnership with each having to hold up our end. That everyday MG teaches me to concentrate on and surround myself with what makes me the happiest and full at the end of the day. That the rest is just stuff for which I no longer have the time or energy. That there really are sunny day and rainy day friends and that it is okay to ask for help when needed. And on a lighter note: That it's okay if the bed isn't made or the dishes aren't immediately put in the dishwasher (or that my husband really hasn't forgotten how to cook or do the laundry). That my family sometimes likes cereal for dinner. That the fashion police doesn't really exist and no one actually notices that I don't have on mascara. That I kind of like my hair short and I don't actually have to wash it everyday.
Wishing you this best,
~sherry from texas

My husband continued to loose weight while on low dose, up to 80mg. I thought it might be the imuran that brought his weight down, he is 71 and had a crisis in May. he was 265 then now 220. i was concerned, but neuro said it was ok. He has beem in the hospital for infection, his immune system is low. they took him off Imuran and went up to 125 on prednisone. He is retaining a lot of fluid now. Not sure on his weight now.
We weigh every day, do blood pressure, blood sugar 4 times a day we chart it all and take it with us to each doctor.Conserve your energy, make things easy on yourself. Take care
Linda

Hi Camybaby -

Unfortunately, MG is a game changer, in one way or another, for all of us. Our outcome is very much related to how we handle the disease.

The first thing I learned about this disease is that the docs (neuros) know almost nothing about MG and they are far too conservative with prescribing meds. I am a poster child for prednisone, the one drug that simply changed the world for myasthenics single-handedly. Before prednisone, a substantial portion of MG patients died from complications from the disease and prednisone alone changed that. PLEX, IVIG, Imuran and CellCept are all newcomers to the party.

First thing is to get PLENTY of prednisone into your system. Yes, there WILL be side effects from taking large doses (40 to 100mg per day), survival not being the least of them. I have had most of those side effects, including cataracts, diabetes, infections. I'd do it all over again because it saved my life. I can't worry about all those minor issues when, compared to death, they simply don't figure into the equation.

Next, start taking an immunosupressant immediately. It will take months to kick in, but it will spare you needing that miserable prednisone.

Take EVERYTHING your doc says with a grain of salt. He or she is no expert in MG, since the only true experts are those of us who live with it.

Pay NO attention for insistence by any doctor that you get a thymectomy. Unless you have a thymoma, there is usually little reason - or benefit - from thymectomy for the MG patient. Longitudinal studies are begining to show the folly of thinking that all MG patients should have one as a matter of routine. There are lots of folks in this forum who have had thymectomies and are suffering with symptoms 20 years later.

My ladyfriend and I spent a lot of time discussing these matters this weekend. She was showing me all the pathways for neuro-conductivity and discussing the chemistry behind it. She also mentioned that there is some new research finding new T cells that may have implications for MG patients that were previously unknown. When discussing the thymus' role in the whole thing, she says that there is no known connection and the previous reasoning for thymectomy is now becoming mmurkier than ever. As a trained physician herself and as a research scientist in immunochemistry, she's sort of the "doctor's doctor," advising clinicians on these matters. What she does make exquisitely clear is that less is known than not known.

Yes, you can lose weight on prednisone. I lost 50 pounds and became emaciated. I was on 40mg and should have been on 80mg, hence I couldn't swallow and had no way to eat.

Curt

Thanks everyone for your response.

Camy,

I think trying to focus on what you can do, not what you can't is a big help and it's hard when you're seeing doctors and they keep asking what is wrong. Once you are diagnosed, you don't have to focus on what is wrong. It is hard to feel normal when you have to take medicine, I am waiting for the time when it isn't a reminder that I am sick, just something I need to do at a specific time--maybe set an alarm, so you don't have to think about it. I spent last week at a conference with a hiking stick, so I could get around. Funny to use it up and down the stairs, but it felt more like hiking and less like limping, and if anybody got in my way or got fresh :-) I could beat them with my stick. Finding humor and kindness and wonder in day to day things goes a long way and counselors (as long as they don't keep asking what is wrong) and antidepressants don't hurt either.
Hang in there,
b.

I use my phone alarm as a reminder to take my meds. I have a silent reminder for my mestinon (my symptoms are usually my reminder for that) and an audible alarm for my tacrolimus.
One neuro suggested I get a walking stick.Said it really helps with balance. It is a good thing to have around. He said he had a patient that had a Lucite stick--that you really didn't notice it. (I'm afraid I wouldn't be able to find it if I put it down!).
~sherry

As a follow-up to Beth's comments about anti-depressants, I've got to interject that their use really concerns me.

I was prescribed 20mg of Lexapro by my neuro when I was first diagnosed with MG. Lexapro is in the class of drugs known as SSRIs. This drug is supposed to prevent affect swings in either direction. I was told that is was essential to my healing as it would help me to deal with anxiety.

Please forgive me but that's B#%&$#IT! Utter and total nonsense.

As a neophyte MGer, having already told my new doc to take his thymectomy and shove it, I didn't want to alienate him too much and complied with his wishes, taking the Lexapro.

Bad move. Lexapro is to affect what lidocaine is to dental work - you don't feel a thing. This junk made me feel like I was on a cloud, like I was numb to everything around me.

After a while, I noticed that neither my MG had improved nor my mood. My depression over my MG moved from my affect to my intellect and I became very angry, especially with my neuro. After 2 years on the stuff, I threw it away. That was the best thing I ever did for myself.

As soon as I got off the junk, my MG started to improve, until reaching the point where I'm at now where I am 98 percent asymptomatic and living an active, if not physically strenuous, life. I have a demanding professional job and cope well with it.

The best thing I ever did for anxiety was to up my dosage of prednisone from 40mg to 80mg. That put my symptoms at bay, giving my affect the break it needed. I could then happily deal with little problems like cataract surgery in both my eyes, sigmoid colon resection in two separate surgeries, diabetes type 2 and insulin every day, myriad infections, moon face and all the rest of it. These side effects were a piece of cake compared to life with Lexapro.

I don't like to give advice, only suggestion, but I will say that life is better without the junk. If you want to get trashed, drink. Get good and drunk one night, then sober up and promise yourself never to do it again. Whatever you do, don't get hooked on booze, pot or, for heaven's sake, SSRIs.

My leveler is riding my BMWs and letting the wind hit my face, so I can feel life. I was dead once - clinically speaking - and I'm not going back there again.

You WILL get better. You will get undepressed. You won't get undepressed by numbing yourself to life or your disease.

Prednisone can help you find the peace you need.

Curt

I know, I know: prednisone is my answer to everything.

Yes, it is. In high doses. :-)

Curt

Like Beth said... finding HUMOR and KINDNESS are key! ;)

A strong support system has made the biggest difference in my "Dealing" with MG!
I have found it to be an emotional roller coaster many times in the short time I have been processing as well!
Don't be afraid of the bummer moments... they happen to the best of us! But if they get too large or last too long, seek care for those as well!
Blessings!
Becca

Being handed an antidepressant because you have a chronic illness is not good medical care. Being evaluated because you are having significant problems with anxiety and depression and choosing treatment based on that evaluation whether therapy alone, medication alone, or both, is. Most studies show that therapy or both work best. There are more than just the SSRI's to treat depression and mental problems with prednisone are common enough that I saw a physician suffer through a fulminating case of poison oak rather than take the stuff (not me, I couldn't stand dripping through bandages!).

As Curt points out, short circuiting grieving through drugs is a bad idea; but prolonged disability and depression is really dangerous. I wish you well in finding a definition of "fun" that may be different from what your current friends find "fun-ny". What your counselor probably means steering you this way, is that you will find people here who know what you are going through, though not exactly how you feel; and in this virtual community you will find very real caring and concern.

b.

Cambaby!
Don't beat yourself up! MG is a gamechanger, but I prefer it to many other diseases.
1.) It's not fatal
2.) It's not painful
3.) It lets me keep my good looks!

Just be careful with the early days of being in our little club, as that's when you're most likely to go to the hospital. With luck, you will survive for decades... The guy who ran the Brooklyn MG support group died, I was told after my diagnosis. The good news was that he was in his late 80s!