Myasthenia Gravis.??....
 

Hi all,

I just wanted some opinions from people that suffer with MG or people that suffer with something that has the same symptoms that I have...

My doctor suspects I have MG and has done blood tests (which we are waiting for the results) referred me to a neurologist for an MRI (which I am waiting for an appointment)

I am a 30 year old female and for the past 4-5 months I have had:

* double vision (that can last 20mins-6 hours) Happens 1-2 a month
* buzzing in ears
* lightheaded feeling for days on end
* severe tiredness
* episodes of heaviness in arms (i can't move them) that triggers nausea and feeling like I may faint (this lasts 30 mins each time)
* muscle twitching in eye that can last hours
* constant pressure feeling in head
*weak and shaky arms when I become tired

I have read up on MG and I just don't think it is what i am suffering from...

I just wondered if there was anyone else out there that suffers with these symptoms?
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Hi and Welcome!

I think MG is a possibility that should be ruled in or out for you. Unfortunately, your blood work could come back neg for MG .... but you could still have it. Many folks here have MG but the antibodies that prove MG just aren't in their blood. (seronegative).

Not to worry about that now. Take it one step at a time and KEEP ALL YOUR TEST RESULTS in your own folder starting now.

Many of us have travelled a long rode with more than one neuro as we search for a daignosis. It will be worth a ton if you keep your own records on the chance you end up on one of these long journeys (which I hope is not the case).

Hello!

These symptoms sound as if you may have MG. Everybody experiences MG slightly differently. I had most of these symptoms except the buzzing in my ears and the pressure feeling in head...I am not sure if these two are MG related, but I do know that being weak for long periods of time causes other symptoms that are not directly related to MG.

There are other things that cause similar symptoms, such as low vitamin B levels. I think your doctor is doing the right thing by testing you for MG. I hope you keep us updated on the results.

I wish you the best. It is not fun to suffer with these symptoms, I think you will find many people that can relate what you are going through. This is a great place to find support.:hug:

Thank you Suev and DesertFlower for your replies...

I am so pleased to have found this forum as Iv been feeling quite alone with these symptoms...

I am a working mother of 3 so initially my Doctor would just dismiss my symptoms as "tiredness" as I have a "busy" life... He only took it seriously after me constantly coming to see him!

I've had to go part time and have a family member help me out as these symptoms are taking over my life and making things seem soooo much harder then before!

Suev: if the blood results come back negative, will the MRI show evidence of MG?

Hi, I just want to say welcome. This is a terrific place for helpful information and support.

Some of your symptoms sound like typical MG, and some don't (but I think all of us have some symptoms that aren't "typical"--MG is like that). If your blood test comes back positive, then you are diagnosed. If it comes back negative, your doctor will probably want additional tests, like a SFEMG (single fiber emg). I'm glad you're having an MRI too.

All of us here started out like you--with frightening and confusing symptoms. So we understand how difficult the position you're in right now is. We hope you get answers soon.

Abby

The MRI is to look for signs of something other the MG, it doesn't show evidence of MG. It is used to rule out MS and maybe other problems.

I understand feeling tired. If you have MG, the more you do the more tired you will feel, it is important to rest.

A couple of 'typical' things about MG:

Usually you will be at your best right after waking from a restful sleep. Then, the more you do; the more you wear down. BUT rarely the same way or amount on different days. Some days we may feel great...and then we overdo and feel really low for a bit! Weakness is closer to the trunk of your body, as opposed to starting with your hands or feet first. The weakness usually improves with rest - but may return quickly with activity.

Extremes bother us - too much heat...or cold...or stress...or talking (for some), or vacuuming (lol, for me!) Alcohol makes many of us very 'heavy' as do some medications.

None of us experience MG exactly the same way - - though we can all relate.

My first neuro did a bunch of tests (MRI, NCV, some clinical evaluation ... but no blood work. He got 'fired' after our second visit. We just didn't have good chemistry.

Second neuro was/is great!! Did clincal exam, looked at previous test results, said it was probably MG. Ordered blood work, SFEMG, CT scan, and pulmonary evaluation.

Point is...don't be too alarmed - or frustrated - by the string of tests...or the amount of time it takes. If your neuro and you have good chemistry and can work together,,,you'll figure it out and get the help you need.

Pls keep us updated on your progress.....and ALWAYS feel free to ask questions. There are a lot of terrific folks here who have a wealth of knowledge and experience.

And remember, some of the tests aren't to confirm MG - but rather to eliminate other stuff like DesertFlower said.

Gen, just wanted to say hi. Sounds like you have alot going on. this has to be very difficult to handle as a mother. Trying to get rest and manage energy and strength as a mom is difficult even if one is healthy.

I agree with the suggestion that you begin to request copies of medical tests/records. I just have to sign once a year at my local lab so I get copies sent of what ever is done. Sometimes they will say cant you call your doctor but you have a perfect right to have a copy.

Take care
Annie59