I'm really sorry you're going through so much.

Have you ever had steroids before?

There is something called steroid-induced myopathy. Was the increase in weakness associated with the steroids?

http://emedicine.medscape.com/article/313842-overview

They may need to discontinue steroids. Or try Plex (plasmapheresis). Plex is sometimes better for MuSK MGers.

http://www.ncbi.nlm.nih.gov/pubmed/21674519

Have you ever had your adrenal function tested? Time for them to think like endocrinologists, too. If you have Addison's, by chance, that causes weakness, too! Might be time for an endo consult. The nausea made me think of Addison's. Steroids can cause you to crave salt, but so can Addison's. What's your BP like? And Addison's might make sense due to the decreased appetite.

http://www.mayoclinic.org/diseases-c...s/con-20021340

What steroids do is basically replace the job of your adrenal glands. So, if your adrenal gland function is already low, that could cause increased weakness. Are you sweating at all?

It's possible to have Addison's and MG. Many of us have more than one autoimmune disease, unfortunately.

I hope they're keeping an eye on your chemistry (chem panel) and kidney/liver function.

Do you have ptosis? That's an end point they can use to see if a treatment is working.

Not everyone does well on steroids. Things could level off, but it might not be worth the risk to you.

I know your son needs you, but he also needs you to be better. The good news is that usually MGers don't have another crisis.

I hope they run the MuSK test. And if they did the EMG while you are on Mestinon and steroids, that would affect the results, making them look normal when, in fact, they're not.

I know this is hard, but you HAVE TO relax. It sounds like you have smart doctors, but their specialty is neurology.

Maybe someone should check a CPK, if they haven't already.

Trust your instincts and ask for more help, in a calm, using as little energy as possible way, that is.


Annie

I have no insight for you hun but know your not alone! What you are going through is what I went through not too long ago. Unfortunately for me, I only got the IVIG and was realeased into an acute rehab center after 8 days in the hospital. They pushed me way too hard at the rehab center and ended up back in the hospital for another round of IVIG and they decided to start me on low dose of steroids. Unlike you they didn't cath me, instead they used a lift to get me off the bed and get me over a comode so I could do my business (very humiliating but humbling). Needless to say I ended up back in another rehab center after 6 days in the hospital. They FINALLY started me on Mestinon and after almost 2 weeks there I got discharged home. I've been home almost 3 weeks and things are still crappy for me. I'm still using a wheel chair since I seem to use all the energy I get when I get it. I shouldn't even be typing this let alone be on the computer since that alone is enough to make me miserable.

Anyway I'm not typing this to scare you, just to let you know your not alone! The reason things may be so bad for me is that I have another thing going on. I see a Rheumatologist in a week. My neuro doesn't want to mess with my medication until AFTER I see the Rheumatologist.

I really hope for your sake that things start to improve for you and that you don't end up where I am!

The medications they have you on could be making things worse but once you finish the IVIG and give it some time, you should start feeling much better. Patience's is something you are going to have to get more off. It's hard being so bad off, it's frustrating and at time's it's pure hell. BUT remember it could always be worse. I know people hate that saying but it's true. I never thought I'd see the light at the end of the tunnel but eventually I did. I knew it was going to be a bumpy road, but didn't realize just how bumpy it was going to be for me. Hopefully for yourself, you only have MG to deal with. That's bad enough! Good luck, hugs and prayers!!!

We haven't heard from you in a few days. I really hope you're doing better and that the doctors have found a means to keep it that way!

Annie

I agree with everyones comments. I am into this illness for 17 months. Everyone here gave me the best information. For the first 3 months I had the muscle cramps and bad aches in them in between my Mestonin meds. My doctor put me on the time release at night and made a few other adjustments. I have been on IVIG treatments every 6-9 weeks for a year now. Most days are pretty good if I listen to my spouse and take rest periods. The moment I get off my regiment we can expect some issues to start. Your spouse will understand your disease better once he reads and attends doctors appointments. My biggest issue is respiratory.
My chest wall muscles are not working efficiently and I already had asthma. I do better with heat than I do a drop in temperature which is a little opposite than others. However after prolonged heat I have to cool down and rest.
Good luck and you have come to a great group of people for answers.

I'd like to share with the group what I think has worked for me. I was diagnosed with MG by a neuromuscular doctor who did the SFEMG test in December. My symptoms were double vision, difficulty swallowing and slurred speech.

When I went back to see him for the results of the test, my symptoms had lessened pretty much; you might say I was in remission, so he didn't prescribe any meds at that time altho he did mention that if things got worse, he would put me on Mestinon. To date I've been symptom-free.

I heard from a friend who also has MG that he put himself on a regimen of Manganese and over the years, has been symptom free. He was a heavy equipment operator when he first experienced double vision, so, of course, his livelihood was threatened. He recommended a book, The Thymus, Manganese and Myasthenia Gravis, by Dr Emmanual Josephson, and to read it if I could find a copy ... it's out of print. Fortunately, I was able to get a copy ($$$) and it had great information on MG and how those with MG are usually low in Manganese.

I, too, am taking Manganese, along with many other supplements, which I get from my naturopathic practitioner who has been treating me for Hashimotos Thyroiditis, another autoimmune disease.

I suffered for years from leg cramps which would wake me four and five times a night; sleeping was seriously compromised ... two-three hours a night. Not good.

A couple of months ago, I found The Autoimmune Paleo Cookbook, which I have been following fairly rigorously and my leg cramps have disappeared. I think eating more protein has been one answer for me.

I am better now but still working on becoming 'more better'. I think the Manganese plus change in diet has benefitted me greatly.

What I'm finding is that we have to be our own health advocates and that we have to keep on looking for answers, and for me, that means going the alternative medicine route. Traditional practitioners certainly have their usefulness, but what I've found is that they pretty much have tunnel vision and know only a little. We who suffer from autoimmune diseases need to think 'outside the box'.

No offense meant by this, finuch, but what you are suggesting is not only unscientific, but highly dangerous.

Manganese is found in many foods. And, yes, there are other foods that might decrease that effect. But to say that manganese alone with "cure" MG or make it better is nonsense.

And that metallic element is only a small portion of that book's contents. If you read any critical reviews of it, you will find that there is no scientific basis for the claims being made.

Yes, there is some basis to the nitric oxide and oxygen relationship in the body, particularly when it comes to cancer, but that is far more involved and complex than simply using manganese.

I'm glad that it worked for you, but to post that on a thread where a woman is fighting for her life in the hospital doesn't exactly help her! And I hope that she is doing okay, because we haven't heard back from her. She was very scared the last time she posted!

I'm sorry to be so blunt, but I have heard this argument too many times and it does not hold water. I'm all for alternative or complementary medicine, but that needs to be used within the care of a doctor and the consent of the patient.

I hope you understand my response.

Annie

Hello, I'm sorry for not posting anything for a while but I just got discharged from the hospital 2 days ago after almost 2 weeks in ICU. I got so weak in the hospital that I was basically sleeping most of the day.

Annie,
Thank you for your last post with the suggestions.
My NJ neurologist teamed up with other specialty doctors- endocrinologist, oncologist/ hematologist, nose/throat specialist and GI doctor so they all can test me for other stuff like you suggested and they didn't find anything else so they kept the MG diagnosis. My neurologist after my severe attack on Monday March 16, stopped IVIG and stopped the steroids. She only kept me on Mestinon 3 x 90 mg. Then she told me that she never had a patient with MG that would have those I would call it "waves" of weakness and heaviness few times a day as per her MG doesn't fluctuate as rapidly over few minutes or hours. On top of that all MG tests are negative so we don't have confirmation it is MG. She even suggested it may be periodical paralysis just based on that one time attack in the hospital. She said she doesn't know what to treat me for anymore and she offered to arrange a transfer via ambulance to higher level hospital in NYC which is University Hospital and they have more resources there to help me. I got transferred and in the new hospital they reviewed my records and spoke to me about my symptoms and did standard neurological test and said they are 99.9% sure it's MG. I also have ptosis which made it easier I guess for them to determine if it's MG or not. They said it makes no sense to run new tests like EMG, bloodwork etc since I already received 3 full IVIG treatments so results of the tests wouldn't be accurate. The interesting part is that they lowered the dosage of Mestinon from 3 x 90 mg to 2 x 60 mg. I don't feel super because I'm very weak and tired but I feel much better on new lower dosage of mestinon than on the higher one. On the higher dosage my brain was not working, I felt completely out of what was happening around me, I had extreme twitches all over my body which felt like somebody is torturing me by touching me with electricity cables and I was shaking like I have Parkison's disease. When my husband asked the doctor in NJ before I was transfered to NY if that could be severe side effects from Mestinon she said absolutely not. We are new to this so with no experience who should we trust in if not doctors. To cut it somewhat short, I was released from NY hospital and one of the paragraphs on the discharge papers says I was over medicated and my body was toxicated by medication overdose. Obviously I didn't do it to myself at home, it's something that happened during the hospital stay. Now, when I think about it more, my NJ neurologist increased my Mestinon to 3 x 90 mg 5 days before I got to the hospital so I think that's when everything started. Even though I had no side effects from taking more Mestinon for those 5 days while at home, until the day 5 when I got admitted to the hospital due to extreme weakness where I wasn't able to walk. It's been a extremely difficult experience for me and my family but I hope it will get easier from this point.
Do you know anybody who tests negative for everything and still has MG?

Thank you for reading, sorry for very long post but I had to fill you in.

Just an FYI as far as the twitching goes when I first started Mestinon the doctor gave me too much and it gave me full body twitching. My neuro then stopped it then started me at 30 grams 3 times a day and after a week or so upped me up to 60 grams 3 times a day. I've got a presumptive diagnosis since single nerve was positive but my modulated antibody was borderline positive. I just got out of the hospital 2 days ago for my 3rd IVIG since January of of this year. MG is a weird and affects everyone differently and there are antibodies that are being discovered yearly. As far as antibody testing YES you can still have MG as far as the other stuff, I'm not sure. I'm wheel chair bound right now fighting to get out of it. BTW I live in PA. My husband is from NJ. I hope things start progress for the better for you!

Hugs!!

Thanks for letting us know how you're doing!

Wow, I feel like an idiot. Although I didn't know about the increase to 90 mg! Did you write it and I missed it? I'll have to reread everything!

You had a classic cholinergic crisis. And the "waves" of weakness were due to that! Too much acetylcholine instead of not enough. They might've been too scared to take you off of it, because you were so weak.

For example, Mestinon wears off. You take it. It doesn't kick in for about a half an hour. Then it is active for about two hours. Then it wears off 2-1/2 hours after you take it. Now that's a roller coaster ride courtesy of a drug!

That's why, during a crisis, doctors will often take away the Mestinon at first to see if it's a cholinergic crisis versus a myasthenic crisis.

I have to disagree, however, with the view that MG doesn't fluctuate that much. I can be okay, and then crash an hour later. It all depends upon what I've done that day, the day before, and the day before that! I get what I refer to as "two day payback." My MG always has this "build up" effect after going out and running errands two days afterwards.

They couldn't fully evaluate an endo issue while you were on steroids (or days later). I would followup with one after you are feeling much better.

Have you ever noticed a drop in energy (or a rise) after eating high potassium foods, such as bananas, potatoes, etc.?

Another thing you might try is to have both vitamin D and calcium three times a day. They make chewable kids calcium that is lower in dose. Calcium can help the acetylcholine process (look up channelopathy). Besides, many people are deficient in D. Have you had yours tested? Do you take daily calcium?

The difference between experienced MG doctors and ones who don't know much can be like night and day. It sounds as though you were evaluated enough for them to know you have MG!

There are so many seroneg MGers, and they keep discovering new antibodies.

One thing they don't often discuss is that there are circulating antibodies and tissue bound ones. Some MGers have antibodies show up later in the disease process. Antibody levels fluctuate, as they do in any autoimmune disease, and that doesn't mean someone doesn't have a disease.

Only LEMS and a CMS act like MG. Meaning that there are few diseases with fluctuating muscle weakness, such as what you have. And MG is a clinical diagnosis that is backed up with tests, because there are so many variables in diagnosing MG. And while there are classic MG symptoms, such as ptosis, there is not a classic MG patient presentation. Yes, fluctuating weakness is the hallmark of MG, but, beyond that, we all have different "sub-types" of MG. Some people have worse neck issues, while others have weaker breathing. Some MG patients have a mild MG and others, unfortunately, have "brittle" MG, where it doesn't respond well to any meds.

I really hope you continue to get better and never have to go through all of this again!!

I'll bet your family wishes for that, too!


Annie

Rockenmama, I'm so sorry that you are wheelchair bound! Do you have a good support group? I hope your docs have you on a regimen now that will get you back to walking and doing! How frustrating MG can be. I dread getting worse.

I tell you some of the Neuro's do so much damage saying anything at all! I was told that once that MG does NOT wax and wane. That if once negative you will never be positive. that . It it only presents one way etc etc etc. I feel for those who aren't lucky enough to find someone experienced enough in MG!

and I second the group hug and all of the rest of Annie's sentiments!