[momof4girls30]

I found this forum a couple of days ago tryin to get some answers to questions that I have been dealing with. Well, I am 34yrs old, mother of 4 beautiful girls. I have been married to the love of my life for 15 yrs. 8 yrs ago I started having double vision. Went to several drs, none could tell me why. So I dismissed the issue, and just dealt with it. Well, a year ago, I developed right sided weakness. I started falling alot, like my leg would just give out. Sometimes my right eye couldnt even open because it was so tired. Went to a neuroligist, she wasnt sure what it was, so she sent me to another one. He did a SFEMG on my left side, which revealed nothing. So now he isnt so sure what I have. The drs just tell me they know that somethings wrong, that they just dont know what. Has anyone else dealt with anything like this?

thanks for listening
Ina

[Brennan068]

Originally Posted by momof4girls30

I found this forum a couple of days ago tryin to get some answers to questions that I have been dealing with. Well, I am 34yrs old, mother of 4 beautiful girls. I have been married to the love of my life for 15 yrs. 8 yrs ago I started having double vision. Went to several drs, none could tell me why. So I dismissed the issue, and just dealt with it. Well, a year ago, I developed right sided weakness. I started falling alot, like my leg would just give out. Sometimes my right eye couldnt even open because it was so tired. Went to a neuroligist, she wasnt sure what it was, so she sent me to another one. He did a SFEMG on my left side, which revealed nothing. So now he isnt so sure what I have. The drs just tell me they know that somethings wrong, that they just dont know what. Has anyone else dealt with anything like this?

thanks for listening
Ina

Hi Ina, welcome to the group.

While MG *could* be what is causing your problems there are other things that could too. Ask your doctors about the antibody blood tests - Achr (acetocholene receptor) and Musk antibodies. Did you ask why they did a SFEMG on your left when your problems are presenting right side primarily? My EMG was done left side when I had mine done too...but my symptoms present left side primarily.

I hope you find the answers you need. Best of luck.

Brian.

[ewizabeth]

Welcome to NeuroTalk Ina. This is a great forum and I'm glad you found us. I'm sorry for the symptoms you've been having. It sounds similar in some ways to MS. I hope being here will help you to cope with what you're going through.

[suev]

Welcome Ina,

I think you're in the right place to get the information you need. Did your neuro do blood work? There are specific antibodies that may be (but are not always) present to help with MG diagnosis. What about an MRI?

If they know there is something wrong - what are they recommending as next steps to determine what it is? Please pursue a diagnosis - and if necessary, find another neuro.
Perhaps some one here could recommend someone in your area. Are you close to unc?

Sue

[AnnieB3]

Hi, Ina. Welcome.

Have you been to a neuro-ophthalmologist for the double vision? Does it go away when you close one eye (that's one clue). Do your eyelids (ptosis), or any other part of your face, droop?

Like Sue, I was going to ask about an MRI. And the antibody tests. Do you mind me asking who did the SFEMG? Was it Dr. Howard? He is an MG expert and works at UNC - Chapel Hill.

It can take awhile to get diagnosed with whatever is going on. Do you have a good primary doctor to test for some other basic things to rule them out, like thyroid conditions, lyme disease, B12 deficiency, etc.?

Do you have any shortness of breath? If so, you can see a pulmonologist for an evaluation of that. While that sounds like a lot of doctors, sometimes you need to do that to figure it all out. Specialists deal with different "body parts" and don't know what another specialist knows.

Becky, another member here who comes on from time to time, found out she had a virus causing some of her symptoms. Look back on old posts for that info.

It may take a while longer but you obviously need to figure this out. Being a Mom of 4 and not feeling well is rough.

I hope you can get answers soon. If there is a chance you have MG, try to stay out of the heat and rest a lot. If you get sick with anything like the flu, see your doctor immediately.

Annie

[momof4girls30]

I did have alot of blood test done which revealed nothing. That ruled out Lyme disease which is what they were thinking first. I had an MRI which ruled out MS. They begin thinking that I had MG so they ordered the SFEMG. Which I wondered if it would make a difference that they did it on the left side when I have right-sided weakness. So now, they arent sure and want me to see a nuero-opthomalogist. If anyone has any suggestions as a good nuero-optho in North Carolina, I would greatly appreciate it. My double-vision goes away when I close one eye. It doesnt matter which. Its usually not so bad when I first wake up, but by 4pm my right eye cant hardly stay open and the double vision is way worse. I'm just tired of all the unknowns.
Thanks for your replies. It means alot.

Ina

[AnnieB3]

http://www.med.unc.edu/ophth/clinica...-ophthalmology

I don't know where you live, so I can't narrow down what to give you! UNC has some of the very best doctors in neurology and neuro-ophthalmology.

Again, it would help to know what doctor did the SFEMG. Was it an MG expert?