[Meech]

Hi. First I have no kind of diagnosis, and had never even heard of MG until I recently. I do already see a neurologist for a seizure disorder and I have some peripheral neuropathy. because of medications I'm on I've been having tingling and numbness in my arms ( could also be the PN ). When I mentioned to him I was also having a difficult time doing things in the kitchen like mixing things without my arms wearing out he sent me for an mri and I have an emg set for Wednesday.

As far as I know it is a regular emg. I have been having problems with my eyes, that started last summer and I thought it was caused by a new medication, but continued after it was stopped. I never ever thought to mention it to my Nero doc. The blurred vision comes and goes as does my one drooping eyelid (but it does seem to be happening a little more). What has really started to bother me is if I look to the right I see double and if I hold looking that way for too long when I look back to the middle it seems to take a while for my eyes to catch up and focus again if that makes sense? Am I reading to much into all this? My eye issues could just be a separate problem and I am trying to fit it all together. Thanks for reading and any opinions.
Meech

[southblues]

Yes it is ok to post here. You are welcome. MG will no doubt be in the list of things that they check you for. It is usually a long journey to a neurological diagnosis.

[Meech]

Thanks. Do you know what they can tell from a regular emg? I don't have a follow up with my Nero doc until the end of April.

[AnnieB3]

Meech, Welcome to the forum! Everyone is encouraged to post on NeuroTalk, whether they know what's going on with them or not!!! That's why it's such a great place.

A drooping eyelid is not normal, no matter what the cause. Have you noticed if your eyelid fluctuates? Does it go up and down?

The hallmark of MG is fatigable weakness. That means that the more you do, the weaker you get (relatively). And a MG patients gets better when the rest or sleep (or with drugs).

A neuro-ophthalmologist can also assess your ptosis (drooping eyelids) and tell you if they are fatigable. You could also do an upward gaze test, where you hold your head still while you look up with your eyes. I hate that test! It's always hard to do. Look in a mirror before and after to see if you notice a difference.

If your eyelid(s) becomes worse, try a cold washcloth on it to see if it then becomes better. That's basically an "Ice pack test," but without the ice. MGers temporarily improve right after that.

You might also take photographs of your face to see if it becomes worse at the end of the day or after an activity. Try to take the shots in the same location, with the same lighting and head tilt.

Are you short of breath at all? How is your swallowing? Does your neck ever feel weak? Jaw?

MG often begins with the head/neck area. You might want to start a journal to log any unusual weakness or other symptoms you're having.

Some people with MG don't test positive on a regular EMG, but some do. The same goes for a RNS or Single Fiber EMG.

Did they run the MG antibody tests? So far, there is the Acetylcholine Receptor Binding and Modulating antibodies and the MuSK antibody tests.

Make sure they check your vitamin B12 level. Sensory changes are not a part of MG. They might be thinking about multiple sclerosis, too. You can have more than one thing going on at once! Many of us do.

Also very common is celiac disease and a vitamin D deficiency. Do you have any digestive issues?

BTW, even if you don't see your neuro until then, you can still get copies of any test results! So get your medical records!

I hope you will get answers soon, but sometimes this can take a while! Keep asking questions. This group is great!!!

Annie

[Meech]

Thanks for the reply. I've noticed my eyelid, it's only ever the one, I can wake with it drooping and it goes away within an hour. If I'm tired it can start and if I nap it will go away, and lately sometimes if it is really bright I think it may be making it happen.
I do have low B12 and low vitamin D, which I am treated for as well as digestive and breathing issues as I have cystic fibrosis and cf diabetes (luckily I am healthy for a cfer)
I haven't noticed anything with my swallowing or my neck but I can't chew gum anymore. No blood work has been done yet, just the MRI and the coming emg.
Again, thank you.

[AnnieB3]

How are you being treated for the B12 deficiency? I hope it isn't shots! You can take the methylcobalamin tablets daily yourself! 1 - 2 tablets twice a day of 5 mg. I like the Jarrow Formula brand, but there are other good ones. It's cheapest on Amazon.

There are some people who cannot convert the cyanocobalamin into methylcobalamin in order for the body to use it. They have a MTHFR mutation. So the cyanocobalamin shots would do nothing if you had that genetic defect.

Wow, you have a lot going on! I'm sorry about that.

I hope the tests go well!

Annie

[Meech]

It is shots I take for my B12, but my levels are good now. They are checked yearly as part of my blood work needed for CF check up. The emg went ok, I know it showed some neuropathy that I already knew about besides that they said a report would be sent to my neuro doc. The testing doctor did order an Acetylcholine receptor antibody test though. I have an eye doctor appointment next week, just with an optometrist and if they find anything they will refer me to an ophthalmologist. So until I guess I just wait. Thanks for all your help.
Meech