Hi, Elle. I'm sorry you're going through the diagnostic roller coaster, as so many of us have.

Which tests came back negative? AChR antibodies? MuSK antibodies? Did they do anything else?

First of all, quit with the thinking "it's all in my head" BS. It's not. Some people are hypochondriacs, but, come on, do you really think you are?!

Fatigable muscles are the hallmark of MG. And CMS and LEMS. MS tends to have more of a static weakness that can change over time. With MG, it's more of a do this, get weaker situation. With MS, when the nerves get worse, the muscles follow suit.

I'm pretty sure everyone is getting sick of my saying this, but . . . have you had your vitamin B12 checked? It can mimic signs of MS.

If you have MG, you need to be careful to not overdo things. If you tell us where you live, maybe someone can refer you to a good MG expert in your area.

Also, a neuro-ophthalmologist (not a regular ophthalmologist) can assess whether you have fatigable ptosis and try to figure out the cause. Was your eye exam with an N-O or a regular O?

If you feel so weak that you can't move well, breathe well, or can't swallow, that is an emergency, whether you know what is causing it or not! It would be time to dial 911.

Do you have any difficulty breathing?

In what part of your body did your symptoms of weakness begin? How long has it been going on? These "clues" are very important when trying to figure out what is going on. If you can, write down everything you can remember, what is going on and when. Take photos of your face when you are well-rested and then when you are worse, keeping lighting, backdrop, and head tilt consistent.

And if you do have MG, stay out of the hot weather! It can make MG exponentially worse.

Many of us had to go to multiple doctors in order to get a diagnosis. A neuro-ophthalmologist, neurologist (often more than one), pulmonologist, etc. A good neuro will do a thorough clinical exam, order a slew of blood tests (not only the antibodies), and order a RNS, EMG, or SFEMG. And then follow up to discuss all of it!

There are people who test negative to the antibodies who still have MG. LRP4 is another MG antibody, but it is not available yet. They are still finding more! So a negative test does not mean you don't have MG.

You can have more than one thing going on. The common ones for those with autoimmune issues are thyroid, B12, D, other endo issues, celiac disease, gluten sensitivity, and other AIs.

Gluten sensitivity is being shown to cause dementia in the brain, which can lead to all sorts of CNS issues.

So, do your part by journaling what is going on, get a good neurologist to assess you thoroughly, find a N-O to do the same, and have some other basic testing done by your primary doctor. It might take some time, but you need to have this figured out in a timely manner!!!

I hope you can get help soon. Work the system.

Annie