Mandy, Hi. I have to tell you that I took some time to digest your post. I can hardly believe the lack of care you are facing.

First, oligoclonal banding is present in more than MS, such as Lyme disease. With your leg weakness, I'm surprised they didn't think of Guillain-Barre. MG is "usually" a head and down disease while GB is, again, "usually" a leg and up one. It progress, however, fairly rapidly.

It seems obvious that you could have more than one thing going on. Did anyone do a chest CT to look for a tumor of your thymus? Sometimes people can have a tumor that causes MG antibodies, have signs of the disease but then the tumor is removed and the MG symptoms go away. Granted, that's pretty rare but it does happen. Unlike some doctors, I don't think "rare" things should be ignored just because they aren't seen often. Striational antibodies are more associated with thymic tumors but not always.

I'm exhausted already! Okay, there's no such thing as a "minor" lab result. It's not only the absolute numbers but the trends in numbers that are important. And there's no such thing as too many details in medicine. Do you have ALL of your lab results from your hospital stay? If not, get them.

MG antibodies have shown up in "normal" people, sometimes in ALS patients (don't freak out by my saying that!) but usually in those with MG. There are MG patients who have ONLY AChR modulating antibodies. I'm one of those patients.

Prednisone can make patients worse or better and sometimes it's not because of the effect on MG. It's a complicated drug with a LOT of side effects. You do have a lot going on and you don't know for sure yet what is causing what or affecting what, unfortunately.

I am concerned about the polyuria. You should see an endocrinologist right away. Not all of your answers will be found by a neurologist! Since you do have more going on, you will need more specialists. That's a VERY important way to think. You wouldn't go to an auto mechanic to get your hair colored or a podiatrist to get a colonoscopy. Neurologists only deal with their specialty.

I am VERY concerned about your liver and kidney function. Can you ask your primary doctor to recheck all values, including a comprehensive metabolic panel and a UA with culture? Has anyone checked you for lupus? Polymyositis? And you could have diabetes, which is no small thing. Swings in sugar can do all kinds of damage to the body.

Simply because there is a lot going on does not let any of your docs off the hook. But you might want to realize that they are out of their realm! So get more doctors involved. See that guy who was recommended by Tatia. Get a endocrinologist to evaluate not only the polyuria but all endo functions. Get a look see from a rheumatologist, since this may not be MS. Work the medical system so it works for YOU!

You can have MG and MS and Lupus. No, I'm not saying that you do but I've known people with multiple immune problems. It's not fair that you have to do the work here and that no one has truly helped you yet.

If you get weaker where you can't walk, can't move, can't breathe well or have any other severe muscular weakness like not swallowing, you have to dial 911. If you have MG, it's serious. You need to let people know that you had positive MG antibodies AND the striational antibodies.

The lesion in the brain deserves a 2nd opinion. It's probably not from a B12 deficiency but a B12 def. can cause white matter lesions too. You need a brain neurologist expert to help with that.

I hope you have some support and people to take you to doctors. This can be a very exhausting process and you have to take it very easy right now. I can't tell you how sorry I am that you've had to go through this and still don't have good answers. If I haven't answered enough questions, say so. I'm not feeling too well lately and I may have missed something. Take care,

Annie

Duh, One more thing. If you still have the effects of Pred in your body or are still on it, it WILL affect an EMG or the antibody tests. If you had that high of an antibody result while on Pred, then how high would it be off of it? It's the obvious stuff that gets missed.