Question for the group
 

Hi Everyone!
I am studying and researching MG. I have had some double vision, blurred vision in both eyes, eye drooping on left side, and falling episodes....wrist pain with typing and writing...My Family doc referred me to a neurologist..he had me walk in a straight line on my tippy toes, ....and I couldn't do it! I was scared that it was MS..but the MRI was normal, EMG was normal (no carpel tunnel either), and no antibodies were detected in the lab work...also, cat scan showed the the thymas was not enlarged....

The doc put me on pyridostigmine (60 MG three times a day)...My hands are swelling and my ankles are swelling....and my hands get so tired when I type. I have to take frequent breaks from typing.

In your experience are these normal symptons of MG? Can you still have MG if all tests are negative? The Doc says that all signs point to MG...I am searching for information...

Any advice or help would be greatly appreciated!!

Cricket

Hi Cricket,

welcome to the forum!!

I started out with double vision and droopy eyelids, amongst other things as well.
When I met my neuro for the first time, he to made me tiptoe and walk on my heels, both of which I could not do at all.(I can now tho, unless of course I'm having a really bad time)

I don't have any swelling of my hands or ankles.
I do however if I'm having a bad day find it impossible to type for more than a few minutes, before having to rest, or resort to using only two fingers.

hope this helps some, take care and keep asking as many questions as you want, its a great place to find things out, get help, and find lots of people happy to give you help and support.
take care
redtail

Thanks!! I have found alot of useful information here!

Thanks!! I am finding alot of helpful information from this site.

Hi Cricket!!!!
 

It does sound like MG - and that you need more than just mestinon to help you - even on Mestinon I had some ugly experiences, but since I started on the roids' I have been pretty stable!!!!

Hang in there! Tell your neuro that you still feel awful and ask about other meds..........

Erin:D

Cricket...

Do you find that the Mestinon does anything at all for you to help with your symptoms?

Lydia

Does Mg run in families?
 

Hello all! My mom also has a lot of MG symptoms (blurry vision/double vision) , weakness, general fatigue - in fact, the other night she fell over in a chair and was unable to get up - Ihad to lift her.......

For years now she has had symptoms, but refuses to see our family physician......she hates blood work,etc.

She has never had problems swallowing or breathing, but neither did I until I became really ill after my trip to Belize, so my question to all of you is: Does this run in families?

She also has a lot of problems with her memory - and I KNOW MG has affected mine - hate it!

Do any of you have any advice?

Erin:D

There have been some instances of family members sharing MG. However, I don't think it's because it's a hereditary disease, but rather because family members have been exposed to the same triggering phenomenom, whatever that might be.

It's my opinion that MG does NOT cause memory problems. I believe that's the general consensus of the medical community as well. I think it's simply the stress of living with a chronic illness and the effects of the meds we take to combat it that can cause the memory and cognitive issues. As for myself, my memory is as good as ever...much to my husband's disappointment. LOL

Missy

THat does make sense
 

I guess taking so many darn pills every day really can mess with anyone's memory! I have just been feeling like I've been in a fog recently - augh!!!

Had mylast IV IG and felt AWESOME but waaaaaaay over did it and am paying the price! C'est la vie!!!!

How are YOU feeling? Did you have a great xmas?

Erin:D

I am doing well right now. I had 6 weeks almost symptom free and then a one week "mild-moderate" flare up and now back to mostly good. I just infused 50 grams of IVIG this afternoon in hopes of making it through the next few weeks on a high note.

Christmas was peaceful. Visits with several friends and my mom. Everyone liked their presents and there were no "conflicts" of any kind.

Hope everyone else is heading toward the new year in a good state--physically and mentally!:D

Missy

Awesome!
 

I hope this means that next year you will feel great!!!!!!!

Take care!!!!!
Erin:D

No, not really...the double vision did stop..the blurry vision is still there...I have really been in denial....even going to the eye doctor to make sure that it is not my eye..he also confirmed the MG diagnosis...saying that it was my eye muscles....I guess I have been in denial because all the "MG" tests have been negative....I was so scared that it was MS.

I stopped taking the mestinon for about 3 weeks....hoping that all of this was stress and would just go away...but I have gotten worse since I stopped.. my balance is so bad and I have been avoiding social situations if I have to "talk"...I get nervous and my neck flushes so bad when I have to talk in a group or one-on-one with my boss....I talk, but I can't puncuate some words anymore..and it comes out mumbled sometimes... Why is this??


I have been back on the meds for a mestiton for about a week now..and while I have more energy...my eye and speech are really concerning me...Talking in my job is very important...I am worried! I am calling my neurologist on Monday...and explain my situation...I am really scared!

Help with speech??
 

Does physical therapy help with speech?? I feel like I my lips and jaw are heavy...and I can't get the words out...I can puncuate anymore...words like specific...etc...I stumble when I talk alot.....My husband asks me to repeat what I say alot....I feel like people are staring at me..and wondering....I did tell my boss..but I haven't really shared all for fear that I might lose my job for someone who can communicate effectively...

My family doctor also put me on celexa (mild antidepressant)...and this has helped a little bit...to aid me in relaxing in social situations....

Has anyone had this problem??

Hey Cricket!
 

Yep, it's smart to see your neuro and tell him whats going on.....I was the same way with my meds in the beginning.......it is really hard, but just take them and hope your neuro can give you something that will really help!!!!!

My speech was so bad that no one understood me (due to my weak nasal muscles) - I sounded drunk or stoned and I would weave when I walked - in fact, my son called me his "wobbly" mom...........

Hang in there girl! It will get better soon! Once you are on your meds, you'll feel 100% better!!!!!!

:hug:Erin:hug:

My speech problems didn't go away til I was on the roids
 

:hug:Hello again! My speech problems did not go away til I was on my roids. They made all the difference in the world!

I know it is embarrassing, but you have a disease - granted, our disease is one that does have life long remission, but it is still a disease............

Hang in there!

I don;t think speech therapy will work, but hopefully someone who knows a little more will be able to help you with that one..........

:hug:Erin:hug:

Cricket...

I too started my original symptoms much the same way. My voice & my vision WERE my livelihood. I don't believe you need speech therapy. You don't have any impediment, EXCEPT for the fact that your muscles are too weak and don't have the strength required to 'make' the words happen. (You may find that your tongue feels like a dead-weight in your mouth as well).

Mestinon alone helped me originally, however after my thymectomy, symptoms become worse, and adding steriods did help. Nobody enjoys going on them, but they are for our benefit. The fact that the Mestinon is helping some of the symptoms is a good indicator. My suggestion would be to discuss with your neurologist to start you on prednisone so that you can feel the benefit, and then adjust dosage as needed. There is only one way to find out if it will work, and that is to try.

Best of luck....oh and remember... Life is great - even with additional weight! hahahahaha

Lydia

Thanks! I am trying to hang in there:winky:
I am going to back to my neurologist tomorrow. Hopefully, he will understand my denial..and help me get back on track!

Cricket