MG or not? frustrated with docs
 

Hello all. I am new to this forum. I have read some posts in the past, basically trying to get a feel for other's symptoms to see if they were like mine. After seeing a whole mess of doctors, with no real results and just a "wait and see attitude", I decided to post to see if I could get any insight from other folks on here.

! am a 35 year old female and started getting double vision in mid January. At first, it followed a distinctive pattern. It would be absent or very mild on mon and tues, more pronouced on wed, and by thursday and friday it was constant. Now, several months later it is always present...but worse when i look up or to the left (just by looking at me, you can see my eyes don't line up). In the past 2 weeks, the right side of my face has started to tingle and i get a feeling of numbness/heaviness. When this happens, it almost seems as if i shouldn't be able to talk or move it (but motor control is fine, My nuerologist just said "that's unusual".)

CT scan showed some abnormal tissue in the area of the thymus (report said thymoma could not be ruled out), MRI was clean, EMG was normal (this was done on my arm/hand and i am not having symptoms anywhere but my face). And that's about it......MG was thrown out as a possible diagnosis by an opthamologist I saw based on double vision and ptosis. Endocrinologist changed my thyroid meds/levels (I have hashimoto's thyroiditis) but my vision has only gotton worse.

ASny thoughts would be appreciated. I feel as if the docs aren't listening at this point. It is frustrating to wait for appts and then have them not hear you. Thanks!!

MadNurse:

I had the same symptoms! What diagnosed mine as Ocular MG was the Single Fiber EMG to the face. The neurologist stuck the needles in the muscles around my affected eye and the results showed the message wasn't getting from the brain to the eye correctly. My CAT Scan, MRI and EEG were all fine. The SFEMG to the face is what diagnosed mine. I am on Prednisone, CellCept and Mestinon and the double vision only comes back occasionally - which I can live with. Good luck with yours. I am older and have no problems with the Thymus Gland. I did have the tingling and numbness in the face (one side) at the very beginning. That is when they did the CAT Scan. It showed nothing. They ruled it as Paresthesia. I still have some quivering of the eye and facial muscles. Good luck and let me know what happens from here on out.

Madnurse,

Are all the doctors you are seeing aware of your abnormal CT scan? The abnormality with your thymus along with your sx seems like it'd be a no-brainer. Plus, you have another AI disease already.

Have they done the antibody test yet?

I wish you luck in getting the correct diagnosis. It seems like MG to me, but I'm no doc- just another MG sufferer.

Take care
:hug:
Nicky

I wanted to let you know that in the beginning (before my MG diagnosis) I had tingling on the left side of my face and a feeling of heaviness only on the left side of my face. I also had minor double vision at the beginning.

My neuro said the tingling feelings "threw him off" but I was positive for antibodies so I did have MG. My motor control was fine at first with just the tingling face and double vision but my MG symptoms progressed from there and I ended up with just about every MG symptom possible by the time I was given Mestinon as a treatment.

Sounds like you have MG. Your doctor should test for antibodies.

I understand your frustration. I hope this helps.

Thank-you all for the replies. My nuerologist is aware of the abnormal CT scan. he pointed it out to me (and gave me a copy of the report) after my PCP just told me that it was normal. They also found a small nodule in my right lung (12mm) for which my PCP referred me to a pulmonologist. She said she didn't thin it was anything, but since it was larger than 10mm, they needed to follow up on it. But the abnormal tissue in the area of the thymus has not raised any red flags? Not knowing much about the thymus or MG, I am not sure how significant this finding is??

I tested negative for ACh antibodies, and they also tested me for a bunch of other AI disorders which came back negative.

My doctor's seem to be taking a wait and see approach, which I am sure many of you know is frustrating. My double vision is constant and makes me nervous with driving and working. And the numbness in my face just plain freaks me out! But it does help to know that other have had the same symptoms and eventually got diagnosed. I have another neuro appt next week. Usually they see me on Mondays (best for my schedule) but this time I made sure that I schedule it for late in the day and week, when my symptoms are at their worst. I'll keep you posted.

Thanks for the supprt!

Hi
Welcome to the forum. There are lots of helpful people here.

Have you been to see an neuro-ophthalmologist? There are a number of tests/screenings that they can do that may help clarify things; particularly since the double vision is one of your main symptoms. Are you also experiencing ptosis?

Good luck with your next appointment. It's helpful to have someone accompany you to the appointment. They can be your note taker, or maybe just recall things that you may forget. Four ears are always better than two.

Keep us posted.

Cate

no, i haven't been referred to a neuro-opthamologist. it was suggested by my optomotrist (who i first saw for my symptoms), but my PCP sent me to a neuro.
i have bilateral ptosis. i thought i just looked tired all the time, but when the neuro compared it to the picture on my license from years ago, you can see the difference. sailing at half-mast is how i have been described. :)
my doc said something about the next step being a SFEMG in Boston, so for that appt I will definetly bring someone. Thanks!!

No MuSK test?

no, they have not mentioned that one to me yet. I am not sure how that differs from the ACh test. I'll have to read up on it.

Two KNOWN types of antibodies that cause MG. One set is found by the AChR test -- the other by the MuSK test. There are theories that many other antibodies exist for which no tests have been devised -- and that those MGers fall into the sero-negative category.

You already "get" that MG is complicated -- UNLESS you are one of the "lucky" ones who has a positive test result. Even then, you may be in for a "rough ride" because you may look perfectly NORMAL and feel perfectly WEAK and helpless.

There is only one lab in the US that runs the MuSK test -- Athena Diagnostics -- and the test is expensive. If you don't have insurance or don't have GOOD insurance, your doctor may hesitate.........

Hi, Madnurse. Do you have a more informal name?

Don't let doctors get you down. Sometimes they are simply out of their comfort/knowledge zone and don't know what to say. Isn't that what a computer or a Physicians Desk Reference is for?!!!

The fact that you have an abnormal thymus (did they define what that meant?) means that you need to take it seriously. Thymomas are quite common. And you should consult with a pulmonologist about both that and the lump they found in your lung. They are the EXPERTS at lung/mediastinum issues.

Have you ever taken photos of your face when you are doing well and then when you aren't? When I began doing that, I was amazed and horrified at what happened to my facial muscles when I got worse. My nose, which is support by muscles, actually drooped too!! Scary pictures. They are very helpful, however, in documenting ptosis/fatigable muscle weakness.

Did anyone suggest a brain MRI? Numbness is not a symptom of MG but when muscles get really weak they may feel "numb." One-sided weakness can be from other causes too.

Do you have double vision? Take your pointer finger and slowly move it back and forth (side to side) in front of your eyes, keeping your head still. Then try bringing the finger towards your face slowly. Any double vision? Sometimes you might only have DV at certain angles from your eyes, like off to the sides. A neuro showed me how to see this since I only thought I was having blurry vision years ago. A neuro-ophthalmologist can do tests that determine fatigability of the eye muscles, which is useful, and may do a Tensilon test to see if they improve. They could at least do the ice pack test. MG will temporarily improve due to cold (not too cold). You could try that with your eye muscles too, to see if a cold washcloth improves things.

I hope you can get answers. They should test the weaker muscles in the face.

Annie