[AlmostEasy]

Alright so I've been dealing with a host of problems for quite a long time, here is my "Disease Overview". It's a concise summary of everything that has been going on with me, what I've tried to do about it, and lab results etc.

https://docs.google.com/document/d/1...it?usp=sharing

That's the general overview so I'll be more specific in what makes me notice GM as a possibility.

The standout problems I encounter are with:

• Brain fog - Very thick brain fog. Lose train of thought, word recall problems, memories are distant and hard to grasp. My number 1 issue by far
• Eye movement/contact - I have a hard time just looking at things. My eyes constantly bounce away from what I focus on and eye contact is basically impossible. Reading is frustrating as my eyes jump away and I lose my position.
• Facial expressions - Inability to display how I feel about the situation. Makes normal social interaction very inauthentic and shallow.
• Muscle weakness - nothing too intense really, but it is there if I think about it. I guess it's been such a gradual progress that it slipped under the radar. But I do notice it when playing guitar. My hand sort of just stiffens and I'm unable to play like I used to be able to.
• Speech difficulties - I definitely have difficulty speaking, swallowing seems fine though.
• Eyelids slight droop - Probably wouldn't qualify it as full blown ptosis, but it's a definite change from what they used to be. Kind of a dead eyes thing I think I give off the #*$@ you look a lot unintentionally lol.

Also a note of interest is that anything emotional or anything that requires a bit of deeper thought makes me like short circuit. My whole being jumps away from it like it, well, short circuits. If I'm talking with someone and something comes up my eyes dart away and my brain does too, I can't just absorb it.

The supplements that have helped me the most are actually KSM-66 Ashwagandha, and this is one of the "alternative" treatments available for GM that I've read. Now this may mean nothing there's SO much overlap in neurological problems it could mean anything.

I plan on getting some Huperzine A and maybe Astragalus tomorrow at GNC to do sort of a diagnostic run to see if an Acetylcholinesterase Inhibitor has positive results for me. If so I'll push hard to do all the GM diagnostic testing.

So I'm wondering what you guys might think about this after seeing my report there, think I could qualify as a Myasthenia Gravis sufferer?

[AnnieB3]

Hi, AlmostEasy.

I think it's quite dangerous to be self-medicating, especially when you don't know exactly what's wrong yet. Also, some of these OTCs interact with each other and could make your situation worse.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573577/

http://umm.edu/health/medical/altmed/herb/astragalus

I won't even comment on what you should or shouldn't be taking.

You need to see a neurologist to evaluate what's going on. And probably an internist, too. And to fully assess any endocrine/hormone issues, an endocrinologist would be best.

You could ask about having your B12 and D levels tested. Maybe even the celiac disease antibody panel.

There's no way to tell if you have MG. You might have more than one thing going on. You need a smart internist to direct your care and get you to the appropriate specialists.

I hope someone can figure it out for you.

Annie

[AlmostEasy]

Originally Posted by AnnieB3

Hi, AlmostEasy.

I think it's quite dangerous to be self-medicating, especially when you don't know exactly what's wrong yet. Also, some of these OTCs interact with each other and could make your situation worse.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573577/

http://umm.edu/health/medical/altmed/herb/astragalus

I won't even comment on what you should or shouldn't be taking.

You need to see a neurologist to evaluate what's going on. And probably an internist, too. And to fully assess any endocrine/hormone issues, an endocrinologist would be best.

You could ask about having your B12 and D levels tested. Maybe even the celiac disease antibody panel.

There's no way to tell if you have MG. You might have more than one thing going on. You need a smart internist to direct your care and get you to the appropriate specialists.

I hope someone can figure it out for you.

Annie

Haha oh man, I'd be in an infinitely more horrible place if I hadn't undergone the journey that I have. My supplements are very precious to me. All pharmaceuticals were taken under care of a physician, I'm not quite sure what you are referring to, but I appreciate the concern.

I don't take everything continually, I'm only on Fish Oil, D3, Ashwagandha, and T.R.T. right now.

I should've linked my prior labs, I'll add that in. My D3 was low (several years ago) and I've been supplementing that since, and my B12 was fine. I've used B vitamin tinctures and sublinguals to no avail either.

Alrighty though, looks like there's not too much I can gain here then? How is MG typically diagnosed, by exclusion? I plan on seeing a neurologist as soon as I can and my Dr wants to get an MRI and that'll be happening as soon as I find out the cost with my insurance. I guess I'm just hoping this information might trigger someone else's similar experience and could help lead me down a helpful path, I realize I cannot determine TOO much with a professionals help, though sometimes this is possible. Certain things like the cognitive/negative effects in schizophrenia respond therapeutically to simple supplements and that can be very diagnostic for them.

Any other input is greatly appreciated

[AnnieB3]

Here's only one example of what I was making reference to. If you have something such as a CMS, where you have too much acetylcholine already, Huperzine A will make you worse and might actually cause a cholinergic crisis. Also, if you don't have MG, and take HA, that could make you worse/weaker as well.

The problem with a forum is that, well, first, we aren't doctors. Second, we don't know everything you're taking, not even from what you originally stated.

MG is all about muscle weakness that becomes worse after physical activity and relatively better with rest. It can affect any of the 640 skeletal muscles (not smooth muscles).

In order to be evaluated for MG, a neuro would usually do the Acetylcholine Receptor antibody tests and the MuSK antibody test. The neuro would do a thorough clinical exam first. MG is basically a clinical diagnosis that is backed up with tests. Other tests would be a clinical check for double vision, and a RNS or Single Fiber EMG. If they thought you had MG, they might do a chest CT to look at your thymus (some people with MG have thymic cancer).

A brain MRI is only useful at ruling out other causes for ptosis (from MG) or looking for other issues that might be causing your symptoms.

You could go to see a neuro-ophthalmologist to have them evaluate any ptosis or double vision.

What was the exact number of your B12?

Most of your symptoms do not sound like MG, but, again, that doesn't mean you couldn't have it AND something else.

Deciphering medical conditions is not as simple as, "that sounds familiar." Since you have been through a "journey" to figure it out, I'm sure you already know that.

I think a neurologist would be a great first place to start, to at least rule some things out.

Since many neurologists can be rather arrogant, it might be a good idea to list just symptoms and not what you think they might add up to. Neuros tend to think, "How dare my patient think they know more than I do" and that sort of thing.

Anyone else have some ideas to offer?

Annie