You want to see a reading of 50 at least. That is the new lower normal figure.

Ask for the numbers. The video link I gave explains the numbers.

Ok, when i get to baltimore ill ask her to run this

Tyson, I have one thing to add. Are you "craving" candy? If the body is on a glucose/insulin roller coaster, it will crave sugars. What it needs, like Mrs. D. said, is a balance of protein and good carbohydrates. You want the body on an even keel. After years, it can wreak havoc on your immune system, pancreas and other endocrine systems. And sugar is inflammatory. It can do more damage than many drugs. Too much inflammation = Too much pain.

You may also not have adequate stomach acid from your regimen (has to do with Pred, again, and the way it reduces the stomach's gel coating). The digestive system is a cascade of events that need to happen in order and without a good system, the gut accumulates bacteria, food putrefies and you can get a leaky gut and even worse immune system.

So while you don't have "experience" with supplements, I do. If it weren't for Betaine HCL, I wouldn't be able to digest my food. Because I couldn't for years due to undiagnosed achlorhydria (no stomach acid), I had reactive hypoglycemia and several deficiencies, including the really bad B12 one. After taking that "supplement," I got better. My Betaine HCL should be paid for by my insurance company, since it's essential for my good health. Many supplements are one common sense step away from being "prescribed" treatments. It takes smart doctors, some studies and some guts.

Older people don't often die of disease, they die of malnutrition. You need a good, balanced diet. And those damn drugs do deplete your body of what you need to stay healthy. So, in your case, supplements may be even more important!

:hug:
Annie

Pick up a book on biochemistry at a library. That is what makes this connection between disease and foods/supplements crystal clear. I was going to be a biochemist and this is my favorite area of science. It's not voodoo medicine at all!!!

Hey guys- just wanted to let you know she got me an app at 3:30 Wednesday..

I just feel like I'm wasting time and money to an extent. Do you think so or do you think I should go? Because sometimes I feel weak and and can't drive other times I'm at the gym...I require a nap everyday usually and with school coming up I can't do that..

Please give advice

Well, have her check things like thyroid, B12, redo CPK and anything else. Fasting glucose or a GTT. She needs to think outside of the MG realm as well. Just go. You need help.

Tyson,

I am a physician and for most of my neurologists I was even seen as one who is too smart for them.

It took me a long time to find a neurologist who despite that understands that I am also a patient, and a even more important a person.

He recently started me on some new medication, which led to some improvement, but very soon after also to a much more severe exacerbation. When I told him about it, he said that possibly I was so excited with feeling somewhat better, that I did more then I should and that is why I crashed later.

What he said surprised me, because I am very cautious and pay attention to the earliest signs of weakness, as I have learned that if I don't, I will have a very rapid down-hill course, and if I do, I can function at some reasonable level (not something you would consider reasonable, but I have learned to see it as reasonable for me).

But, thinking about it I realized that he is probably right. Obviously, I want to do more, and when I started to feel I could do more, it was hard to pay attention to the signs I knew. I hope this makes sense to you.

He has a lot of experience with myasthenia- real experience not academic-writing about it. He told me quite a few times that in myasthenia he doesn't like treatments that lead to dramatic improvement, because many times severe exacerbations will follow. He told me, what I have learned on my own, but never told by any neurologist before in that way, that in myasthenia you need to find the right balance, and this requires time and patience.

We decided together that I am not going to stop this treatment which made me feel so horrible, but instead I am going to deliberately do less then I can (which is very hard for me, and makes me feel like I am faking, so I know I am going to need his support in that), because he thought (and I agreed) that it does lead to some improvement.

I compared this to what another neurologist said to me, under similar circumstances-"but, you are doing so much better, there is no reason why you should not be able to do everything that you want to do. And then when I crashed, he told me it was "impossible".

I think that in myasthenia, (unless you have full remission, and complete or near-complete disappearance of your symptoms), you will have fatigable muscle weakness, which means that once you use your muscles, you are going to get weaker not stronger, beyond a certain point (which is different for each patient, and may change with time, or with treatment). part of learning to live with this illness is learning to recognize that point, and also learning to find it again, when things change.

Also, don't underestimate the importance of nutrition and finding what is right for you. Think about a marathon runner. part of his training is learning what, when and how to eat. And I fully agree that training of modern physicians doesn't put enough emphasis on this. Very few modern physicians will pay attention to their patient's nutrition, even when they take medications that require nutritional changes and adjustments.

Some of what you eat (or don't eat) will have a direct effect you will notice, but some will take much longer. That is why so many people eat "junk food" which makes them feel great short term, without realizing the long term damage. That is why it is not at all rare for people in the modern world to develop severe malnutrition of various elements (eg-iron deficiency, B12 deficiency etc. and possibly other elements we don't tend to measure) Our body is not programmed to digest all this junk and processed food we put into it. we also have a lot of misconceptions regarding what is "healthy" and not healthy. (many which have been encouraged by smart manufacturers).

For instance, one of my patients told me that when he gave his grandson dark chocolate (which is very healthy in moderate amounts), his son got angry at him (as he doesn't give him sweets and candy, only "healthy" food), and gave him instead some cereal (which has so much unhealthy stuff in it, but is advertised as a well balanced breakfast every child should have).

Tyson, I'll let you in on what some of the patients on PN forum here do.

They keep a record of all their tests, in a folder, and get copies of EVERYTHING doctors test for and treat. This way trends show up and you are always on top of what is going on with you.

You are legally entitled to all your medical test results and records.

You are interested in pursuing a medical career and I can't think of a better way to start, than this.

Here is a sample of the testing excell sheet one of our PNers made on the computer. Of course it features PN tests (of which there are MANY) but you could make your own for MG and your case.

http://www.lizajane.org/

PN is a complex disorder, with over a hundred causes. Diet is often one of them. So keeping track is necessary for the more resistant to diagnose patients. This also helps the doctors because they can see the results and trends quickly without having to try to find test results from the past to compare. I am assuming your chart is pretty thick by now, and hard to go thru.
It saves the doctor alot of time by having the results in handy form, and this translates back to you as being more effective for your treatment decisions.
For example, you could track your Vit D tests, or B12 tests and see if the levels go down, during treatments, or up as desired. B12 may fall over months, when a patient uses drugs for GERD for example. You may see a trend down, and catch it before it starts to affect your neurological functions. Vit D can go down, in patients using anti-seizure drugs. You can track your CBC...to see how your immune suppressing drugs are doing. Things like that.

Please consider doing something like this. All patients with complex chronic disorders can benefit by being proactive and involved. This means diet, lifestyle and other factors to aid in treatment and recovery efforts.

Tyson,
I hope you are able to find treatment that will stabilize your MG a little better. I pray that it will happen sooner rather than later.

I agree with Alice_md regarding nutrition. I can honestly say that I feel better when I eat foods that are healthy such as fruits, vegetables etc. God created our bodies to consume and digest natural foods. Our bodies were not made to digest an overabundance of junk food and foods that contain all those preservatives and such. When you have an autoimmune disease our bodies are even compromised more so I firmly believe that eating healthier can help us.

I also have found that when I stopped eating foods that my body was sensitive to and those containing a lot of preservatives, I felt worse at first because my body was eliminating many of the toxins that were produced by certain foods. I know what foods trigger a reaction in my body and I try to avoid them. Whenever I do eat them, I suffer later.

I'm not saying that changing your diet will cure MG but I can say that changing my diet did in fact eliminate or help reduce some other health problems that I was having which in turn helped me feel better overall.

I also drink a lot of water to keep my body hydrated and limit my activities. That includes exercising. If I can't do it then I don't force my body to do anything it cannot handle. When my body speaks, my mind listens.


Hang in there and keep us updated :hug:

Shari