Muscle spasms and MG???
 

Hi all,
I'm new here, don't have official MG diagnosis yet but doctor said she is 99% sure that I have MG because of my SFEMG test results and because I feel better when I take Mestinon. She put me on Mestinon to try it and see if I respond to it. I tested negative for ACH but going to get MUSK test done next week. My question to all of you is did anybody's MG started with crazy strong muscle spasms? That's what I experienced first and that's when I started going from doctor to doctor trying to find out what's going on. Dont know if I can link muscle spasms with MG or it was completely separate issue I had. I will write more later, need to put my little one to sleep now. Geeee it's not easy to deal with MG and take care of the baby. Thanks for reading! Monika

Welcome Monika!

I have never had muscle spasms with my MG. Some people say they get twitches with (too much) Mestinon. My symptoms were (and are) muscles that get fatigued with use - especially repetitive tasks. Then generalized weakness if I keep pushing it!

Lots of folks here with much experience. Glad you found the site. Does Mestinon help you?

Thank you for responding. I was just wondering if I can link those two together. Muscle spasms went away almost completely when I started having new symptoms like fatigue, muscles weakness. I take Mestinon 3 x a day 90mg. I don't always feel the same after taking it so I don't know if that's normal or not but I think it works. I sometimes feel like a "super woman" who can do all my daily tasks after Mestinon which of course wears of in few hours and sometimes I can hardly tell the difference in how I feel before and after taking Mestinon. This condition is so tricky and confusing. Doctor said my SFEMG was not perfect but not bad enough to make MG diagnosis just based on that one test that's why I'm hoping my bloodwork for MUSK will confirm MG or my Thymus CT will show something. In the meantime I started having problem with my left eye, sometimes usually in the evening my left eye is half closed and it looks much smaller and higher on my face comparing to the right eye. That's not just how I see myself in the mirror but also my family members ask me "what's wrong with your eye, are you tired?". I'm so happy I found this forum as I don't have anybody here to vent to. My husband listens to my complains and concerns but I don't think he takes this as seriously as I do.

Your husband needs to understand your disease as well as you. He needs to study and read all he can. My wife goes into all my doctor appointments. She now helps me with this disease. She can tell when I need rest and helps me stay in control of this crazy disease. Remember first blood work usually comes back negative. Get your husband on your team.
Mike

Wow, that's nice Mike. I go to all my appointments by myself as he always has to be in the office. He helps a lot with our 2 year old though when he is back from work. Also food shopping, laundry and in general house duties are mostly his responsibility. Is that true that most people test positive for ACH and not for MUSk? my doctor said 80% of MG patients test positive for ACH and remaining 20% for MUSK. I would love to be healthy again but that's not the case so I'm hoping Musk will be positive so I can get official diagnosis from my doc and treatment other than Mestinon.

Yes only 20% are positive for musk. My first were negative my next test about 6 months later I was positive for 1 antibody. I am now positive for 4. You will take some time to adjust your life style. The worst for me are hot sunshine and stress.
Mike

I have stressful job so can't do much about that for now but don't have as much sunshine in NJ as you in SC. Winter is very brutal especially this year. I love beach and hot weather or at least I did till now as this year will be my first summer with MG symptoms so let's see how I will handle it.

My first summer I had no clue that heat was bad. I went out on open lake for about 45 minutes. I thought they may have to call EMT's. I laid down in backseat of car with A/C on high for about an hour and recovered. The worst is if you get a cold, flu ect. It really gets me down. It is a continuous process.
Mike

plmonica,
All I could tell you was after I started Mestinon I had some muscle cramps with that. I still do a little, not bad.
HANG IN THERE
FREDH

I agree with Fred. I still get cramps after 5 years.
Mike

I guess no more summer trips to the beach this summer. Thanks for a warning Mike.
Something scary happened today, I had to pick up my little one and when I was driving back home i all of the sudden started feeling so tired and weak all over my body that I couldn't even press on the gas pedal to drive faster than 20 mph. I couldn't risk it with my son in the car so I pulled over and called to be picked up. So frustrating and upsetting.
How do you live your every day lives with this disease??? You are feeling somewhat ok and all of the sudden weakness attacks you with so much power that you can't move your body or even talk. I'm sure you guys are still trying to work, spend time with your family and do stuff that other non-sick people do. How to make it all work ��.

I am lucky in a way. When my bout started I was retired. I had to stop driving for about 1 year due to double vision. Each person has their unique problems. It took a number of years to get my MG stable and figure out all my triggers. I think of my MG every minute of the day.
Mike

That's like good in bad meaning being already on retirement when you got MG. I'm 35 so long way to retirement.
My neuro sent me to ER today as she thinks I might be in crisis since yesterday incident. Can't even walk that's how weak I am. Swallowing and talking is a problem too. My fingers are obviously ok since I can type this from my phone. We will see what's next for me.

plmonica, You have a smart neuro! I was thinking you were close, too.

If you ever get like you just did again, dialing 911 is the best thing to do—along with calling your neuro, if you can speak!

In the hospital, they should check your O2 AND your arterial blood gases. The O2 reading is an insensitive measure of impending muscle failure. If you are stable, they might do MIP and MEP (breathing in and out tests). If your O2 is below 93, they would probably start you on oxygen, while monitoring your O2. If they're smart, they'll check your O2 AND pulse while moving. A higher than normal sitting pulse means that your heart is working harder to get you oxygen.

The options are IV Sol-Medrol (steroid), followed by steroid tablets, plasmapheresis, or IVIG. Or a combo. Since you're new to MG, they might go the steroid route. If they do, make sure they give you a taper schedule, too.

Okay, that's their job. YOUR job is to do NOTHING. No emails, no internet, no nothing. Sit still and rest all of your muscles.

The worse MG gets, the longer it takes to recover. MG isn't as simple as "do something, rest, get better." The more you do without resting and drugs, the worse you get. It can be a cumulative effect.

While Mestinon is a great helper drug, it does nothing to counteract the immune attack on the muscle receptors. Mestinon can make you feel better, and, therefore, make you think you can do anything.

I hope you'll get the best care and recover as quickly as possible. There will be plenty of time later to talk about MG and how to manage it in the future!

Thanks, Sue, Fred, and Mike for helping her out!

:hug:
Annie

Listen to Annie she is our expert. Happy you have a smart neuro.
Mike

Thank you all for support and advice. Annie your post with the info you provided was very helpful, thank you.
Got admitted to the hospital, getting steroids and 5 day IVIG treatment and Mestinon. CT for thymus was negative so at least we can rule out the surgery. They were considering moving me to ICU today because I got shortness of breath on top of the symptoms I already had but with oxygen we were able to stabilize my breathing with no need for ventilation.
I have a question, how is your appetite with MG on daily basis or when in crises. I'm trying to eat as I know it's important too but lost all my appetite. Be well and strong everyone!!

They might want to consider a BiPap while there and/or at home. That's the next step up from oxygen before intubating.

Doctors tend to discharge MG patients too soon, and don't do an "exit evaluation." You can't tell by looking if MG is better. And steroids can temporarily make a patient worse before they get better.

Try to stay away from salt while on steroids so that you don't retain too much fluid. Of course, while on IVIG, you need to stay hydrated! ;) Also, I hope they are doing the routine premed of Benadryl and tylenol before IVIG treatments AND not running the infusion too quickly.

Make sure you take calcium and vitamin D while on the steroids. Plus try to have good prostaglandins (steroids are anti-prostaglandins) such as eating fish or walnuts or having some sort of omega 3s, etc. The reason some people have stomach issues while on Pred is that it reduces the gel coating of the stomach, so having those extra omegas will counteract that.

I'm sure they told you to watch out for a severe headache or meningitis while on IVIG, right?

You might want to invest in an oximeter. I like the Nonin brand but there are many different ones out there. You'll start to see patterns over time and know when you're getting worse (other than checking your strength and ability to breathe!).

I forgot to say that you were REALLY smart to stop driving. When MG gets worse, it's like driving drunk. Response time is slower.

When a person can't breathe well, they have the choice of breathing or eating. Really, it's that simple.

I am the slowest eater in my family because of MG, but that's a good thing. I take my time eating, making sure that I don't choke. Taking sips of water between bites helps, too.

Try to have some protein shakes or something to get more nutrients right now. They can advise you on that.

If you need help with a social worker, by all means, ask them for that help!

Naps are key for you right now. The drugs will help, but you have to slow down. And socializing is one of the hardest activities because it uses more muscle groups at one time.

Well, let us know how you're doing and what else we can do to help you out, okay?

Annie

I think you're exaggerating a tad, Mike, but it's sweet all the same. :hug:

Annie, I'm extremely overwhelmed with this disease. For somebody who was always on the run and master in multitasking the diagnosis of MG sounds almost like a death sentence. That's how I feel right now but I hope it's because it's new and I will adjust to it. They started IVIG last night right after I got admitted but had to stop after 1 hour because I got extreme headache, shivers and nausea. Today they medicated me with Tylenol, Benadryl and lots of fluids for hydration before giving IVIG so I don't get the side effects and I was fine. Also when I got bad reaction they were running the IV at 80. Today they started at 24, increased to 50, then 2 more increases I don't remember what numbers but ended up at 100. I asked what's the max number they can increase it to and was told 180. Will be getting second infusion tomorrow but it shouldn't be done sooner than 24 hours after starting the first one correct? So if I started 3 pm today and finished at 9 pm then tomorrow I should start 3 pm again, right? As far as discharging me home my neuro said often patients start the treatment in the hospital and finish last 2 or 3 at home but she doesn't think it's a good idea in my case. She prefers to keep me here. As far as going home I will probably take steroids but my question is how long can you take steroids for? They have a lot of side effects so I would prefer not to take it at all and take different meds in addition to Mestinon if there are any available that will work their magic and bust my immune system.

Yes, you should have it at the same time. Veteran MGers might not have to do that.

I totally agree with your neuro. You should be in the hospital for the entire treatment, because this is your first one AND you are still in the middle of a MG crisis.

I was on a one month taper of steroids after my MG crisis. Everyone reacts differently and you might be okay with a faster taper or might need a longer one. I specifically asked for a lower dose and a slow taper over one month. Steroids make me nuts (steroid psychosis), so I didn't want to be on them longer than I had to be, but I also didn't want to have a return of crisis symptoms.

What is the maintenance dose they have thought about putting you on? Sometimes they go too high to begin with, after IV Solu-Medrol.

Long-term steroid use is, IMO, dumb. There are so many side effects that you end up with more than the one problem you began with!

If you can use other treatments such as immunosuppressants or IVIG, that's a better way to go. But, and however, it's your body and your life and you need to decide with your neuro what is right for you!

Please don't be overwhelmed! The most important thing right now is to just get through this MG crisis. There are many people who live a fairly normal life with MG. There are those of us who don't. Some people have drug-induced remission and others are drug-free.

Adapting your lifestyle is as important as any drugs you might take. Having support from family and friends helps, too.

And now that you know what happens when you push MG, I doubt you'll do that again! ;)

Sure, there's a lot to learn about MG and it's really not a fun disease, but you can get through it!

Keep asking questions. People here are great and have many varied experiences to share!

Annie

I'm in a very bad situation with my MG or whatever it is I have. Maybe Annie or somebody here has any idea. So like I was saying before I was admitted to the hospital on Friday and I started treatment for MG flare up, that's what they named it since I had no breathing problems. On Sunday I got worse and got moved from regular neuro unit to ICU. I got swallowing problems and couldn't take Mestinon so I have a feeding tube now. Was too weak to get up to the bathroom too so got catheter inserted. I'm on IVIG, steroids and Mestinon. Today was the worse day in my life..... That's how it started: woke up weak in the hospital, got my steroids in the IV, later got headache and nausea and that's when I got weak, actually I shouldn't call it weak, it felt like paralyzed from head to toes. Wasn't able to move at all as my body felt like somebody poured concrete on it and it was too heavy to move. Couldnt talk, my eyes were stuck on one object in the room and felt like I'm not blinking at all. That's when they got feeding tube and catheter inserted. I stayed like that with my body paralyzed until I got my dose of Mestinon and another IVIG. I'm Terrified!!! My doctor decided to do another EMG at the time when I couldn't move at all as she expected that we will get bad results. Guess what.... Test was inconclusive. I did the same test like 2 months ago in her office when my only symptoms at that time was weakness and it wasn't perfect. Now it was! I tested negative for ACH antibodies, don't have results from anti MUSK test yet, CT of thymus was negative too. They said they don't know what I have as I gave all the symptoms of MG but all the tests are negative. Do you think that meds that I'm taking for it could cause a reaction like this? I feel like I have a beast inside of me that wakes up every day to paralyze my body since we started treatment. Is that true that while on steroids you first get worse to get better later?? I'm praying that at least breathing will not fail me as I need to get out of this nightmare for my 2 year old son. Doctors that I have said they never seen such an severe attracts on MG. Btw they have been practicing for 20 years. Does anybody here have an idea what other than MG I may have??? I'm hoping that today was a breaking point in my therapy and I will start getting better tomorrow. I was better with my symptoms when I got admitted to the hospital than now when I'm doing the treatment. Please any ideas you have share them with me. I got strength back in my hands and fingers tonight so I'm typing it really quick as I don't know what's gonna happen in the next few hours. Thank you so much!!!!!! And sorry for a long post.

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. :)

:grouphug:
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

Sonomagirl
 

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!

:grouphug:
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!

No offense taken, AnnieB3.

I wasn’t suggesting anything. What I did was share my experience, which is the purpose of this Forum - is it not?

I did not say that “manganese alone will ‘cure’ MG” (your words).

What I said was: “I think the Manganese plus change in diet has benefitted me greatly“ ... and that I am feeling better. Nutritional therapy is working for me. How can you dispute that?

In the book that I referenced, “The Thymus, Manganese and Myasthenia Gravis”, the author documents the improvement experienced by several of his patients when manganese was added to their therapy.

As for ‘no scientific basis for the claims being made’, I believe that patient experience, with regard to solutions and significant healing, is quite instructive and proof enough that the manganese protocol has worked and is working.

How can you argue positive results?

As for ‘critical reviews’ of the monograph: the medical and pharmaceutical industries have vested interests in promoting the current accepted practices vis a vis MG. I don’t expect an unbiased review any time soon.

And why would you mention cancer? That comment is totally unrelated to my post.

I’m of the belief that ‘one size does not fit all’. What works for me may not work for you, and vice versa.

Thanks Annie! I didn't see this earlier! I have a GREAT husband which is about all I can ask for at the moment. At the moment we're still trying to figure out exactly what's going on. I'm still on a presumptive diagnosis (positive repetitive stim test and borderline modulating antibody test) but neurologist keep saying I don't present like a "typical" MG patient but that (this is at a big medical hospital) but I respond to the IVIG). I'm seeing the head of the Rheumatology department tomorrow to hopefully figure out more of the puzzle. I'm far from stable and my meds aren't right and won't be until all or most of pieces are figured out, so fingers crossed !.

Not wanting to get into any arguments but did find this.
Here http://www.tldp.com/issue/180/Clinic...20of%20Mn.html

Mg and cramps
 

I have MG since 2006. It was diagnosed after numerous visits to the emergency dept at the Hospital. My eye lids kept closing as people approached me. Initially I could see them but as they got closer I ended up looking at their feet. Blood test etc showed nothing out of the ordinary. The Neuro tested my wrist by getting me to bend and straighten them. After the fourth time I could not use them at all. He prescribed Mestinon and this was like a miracle drug at least for 3 hours until the effect wore off. I was put on a High dosages 4 times a day until a couple of years ago then swopped to Azathioprine until December last year. I am now on Mycophenolate 2 times a day.
I get bad leg cramps when it is very cold and during the summer I have to avoid being outside due to an Intolerance to the heat. I have tried numerous methods to stop the cramp but cannot do it. My Ideal heat is 17C. My only solution at the moment is to avoid getting too cold or hot.

Every day is different with MG some days are bad and others really good.

Regards and keep safe

A possible remedy for cramps and fasciculation/twitching
 

I have stumbled on a treatment for the night leg cramps & fasciculation, low-fat yogurt and a banana with a splash of 2% milk. I've had no night cramps for going on 3 weeks now with the exception of the night I tried no-fat yogurt. So, fat is good!

The dose for my 230 lb. frame is 3 tablespoon-sized dollops of yogurt, a whole banana, and 3-4 oz. of 2% half an hour before bed. I'm good for about 9 hours!

I got the idea from a posting here. A couple of folks mentioned a Calcium-Magnesium-Potassium supplement as helping. Those supplements only have something like 30-20-1 mg, respectively, so I went with real food that had tons more.

Works wonders for me.

For the comparison, I take 10x60mg daily, 2 every 4 hours starting at 9am. So, last does is at midnight-ish with the yogurt (sometimes I add rice crispies & raisins!). I can sleep without a single cramp or twitch/fasciculation for almost 9 hours. However, the twitching starts almost immediately 9 hours after the "dose", but I don't get cramps.

Without the "treatment" I would be awakened each night with severe calf, arch, or thigh cramps around 3 or 4am, about 4 hours after the last dose of pyridostigmine/Mestinon., which is about how long it takes for a dose to wear off, right?

With the treatment, I get enough twitches to awaken me 9 hours after the "treatment." I've tried taking mestinon at the 7am "pee call" to see if that changes the timing of the twitches. It does not.

I'd be interested in hearing if this concoction works for anyone else.

Thanks,
Clarke