New without a diagnosis yet
 

Hi everyone, my name is Laura I am 36 yrs old and I have a strong feeling I might have MG. Here is my story....17 months ago I started getting a mild headache above my left eye and then I would wake up with that eye somewhat swollen....my PCP thought that this is an eye infection, however that was not the case because after awhile I realized I would wake up and the left eye looked smaller without being swollen. This would happen only when I woke up or if I fell asleep on the couch watching tv at night etc.....and then things would get back to normal through out the day. Also 2 times I lost my vision at work...where for 10 min or so I have very blurred vision. I am a nurse so I went to ER and they did a CT of the head which was normal. I was dizzy for awhile after that. Finally I got to see a neuro doctor in March who said the only thing he can think of is MG but if the blood test is negative then I dont have it...hmmmm well it was negative but I do know I can still have it even though the test was not positive. Since march now my symptoms changed again.....for 2 weeks or so at the beginning o this month my eye symptoms changed and were more persistent. I would wake up and it would be so difficult to open my left eye. It is like my muscle needs time to "warm up". The eyelid is droopy, the let eye more red as I got more tired, "watery" and when I would wake up I had many days when I felt it droopy all day. It is like I feel a constant pressure on top of my eyelid. Anyway I went back to my PCP and after he tried to convince me that all this is happening because I am anxious/stressed he order some blood tests and a CT. I did tell him that I feel exhausted all the time. He tried to blame it on my job, having kids etc. He tested me for Lupus, RHeumatoid Artritis, vit B12, VIT D etc everything is normal except sed rate is elevated. The only thing the CT chest says that made me wonder is : Findings: There is minimal sot tissue density in the anterior mediastinum typical of thymic tissue. There is no discrete mass to suggest a thymoma. There are punctate right paratracheal calcified lymph nodes. IMPRESSION: Residual thymic tissue without evidence of thymoma
The PCP's nurse called and said everything is normal....
what do you all think?
Thank you so much or all your help

Laura,

I would encourage you to have a single-fiber EMG. Many of us here who are seronegative were diagnosed that way. Not every neurologist does them--you have to find one who specializes in neuromuscular diseases.

My other suggestion is to make an appointment with a neuro-ophthalmologist. Those guys seems to understand MG in ways that a regular neurologist doesn't.

Abby

Thank you Abby! I am very surprised to see that nobody else has any advice :( I thought I will get more answers

Laura, I'm sorry but sometimes we're sort of slow here because, well, we have MG. ;) Welcome and keep asking questions.

Do you mind a suggestion? Can you make your paragraphs shorter? Since many of us do have issues with vision, it would really help to read your posts better. Thanks.

First of all, get copies of ALL of your test results if you haven't already. You'd be amazed at how many doctors don't tell patients everything.

Did he run a CPK?

When you say swollen eye, are you talking about your eyeball or the muscles around your eye?

Have you taken photographs of your eyes/eyelids and face? It might be hard to see any ptosis (toe-sis), aka drooping eyelids, if you don't take a photo. What happens in MG is that the muscles around the eyes weaken to variable degrees and that causes our eyes to focus differently, therefore causing double vision. It can look like blurry vision too.

With MG, you have binocular double vision, where it goes away when you close one eye. Have you tried that to see if it gets better?

You could go to a neuro-ophthalmologist, like Abby said, to see if they can fatigue your eyelids. You know, sometimes what you might think of as swollen might be that the tissue has drooped and looks relatively larger. In MG, it's just that everything shifts downward. ;) Look to see if your eyebrows droop too.

Did they do contrast with the head CT? If so, it's normal to feel a bit dizzy afterwards.

Which of the MG antibody tests did he do? If he only ran the Acetycholine antibody tests, that's not enough. There is also the MuSK antibody test. And you can still be seronegative and have MG. Sometimes that's because there's an antibody they haven't discovered yet or because sometimes levels are low early on in MG. It's normal to recheck them in 3 - 6 months.

Like Abby said, he should've ordered a SFEMG. RNS too. MG is a CLINICAL diagnosis backed up with tests. A negative doesn't really do them any good. And some people only have a positive Tensilon test and positive response to Mestinon.

Have you written all of your symptoms down, when they happen, etc.? That's a very good idea.

Do you have any other signs of weakness other than the eye area?

A PCP is NOT a neurologist! ;) You really should've been referred to an MG expert for evaluation. And he was wrong about the negative antibody = no MG.

I hope you can figure out what's going on. It might take awhile to figure it all out, so please be cautious. So, my advice is to write down symptoms, get your records, get referred to specialists as appropriate and try to relax. If you have MG, stress won't do you any good! Take care.

Annie

Hi Laura - - welcome.

I agree with Abby and Annie....but would also strongly urge you to thank your PCP, get your test results, and find another doc for this. This is over your PCP's level of expertise.

I love my PCP and still use him...but he bombed on my MG dx. Went through many specialty docs (rheumy, oncologist, 1 neuros), before I found my current and 'forever' neuro!!

Also know that I am sero neg, passed every test they gave me except had a 'borderline SFEMG. But I thrive on Mestinon...at doses that my neuro has says no one without MG could tolerate!

Hang in there -- keep looking for the right doc for you.

Dear Larua
 

Welcome to Neuro Talk. I don't have MG, just a suggestion. I would not stop seeking diagnosis, what ever it is that might be wrong. Living with conditions that have no dx are harder to live with than knowing what is wrong. don't let anyone tell you it is all in your mind either with anxiety etc. A person knows when something isn't right. I wish you all the best as you go forward in your life. ginnie:hug: