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Old 04-01-2009, 04:19 PM
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Smile There is always HOPE!

Hello Whirlwind! Thankfully now MG CAN BE CONTROLLED! Back in the 60's it was knid of a "death sentence", but now with proper treatment, you can live an almost normal life........

MG is scary - no doubt about it, but you do have options! IV IG, Plamsa exchange, pred, mestinon, lots of options!

I also had the eye problems until I started on the pred, and am now back to 20/10 vision......

The big thing is to not overdo it! When you feel tired, rest. MG just gets worse if you try and work through it.......

IT does get better! It really does! You are going to have some rough days, but once your meds are balanced you will feel like a new woman.

I am 34 and was dx'ed @ 33. Had my thymus removed last year right after my day and have had many, many IV IG treatments, as well as the plasma exchange - they make all the difference in the world......

A majority of peope with MG lead normal lives.......there are some of us that need a little more "fine tuning" than others, but it will get better!

One girl in my support group here in SA had her thymus removed and went into remission 11 years ago - remission!

Never give up hope! There is always hope! And lots and lots of prayer!

If you do have MG, ,take heart, as it can be controlled........

Hang in there!
Erin
Quote:
Originally Posted by whirlwind123 View Post
Hi all,
I just came back from an opthamologist today., well let me start from the beginning.
August 2008., I started having very blurred vision., but If I closed one eye at a time it would go aways., or if I turned my head different ways it would either get better or worse., it was terrible., difficult to drive., it would get worse as the day went on., and after activity. I went to an opthamologist., who gave me all test., macular degeneration., glaucoma., etc., etc., since I had severe allergies all of my life ( I am 57 years old ) he said he thought it was allergies., even though I tried to argue with him I have never had blurred vision like this., he said use refresh drops to rinse out the allergens., and come back after the frost., ( I was not particularly fond of this Dr. ), I then went to my family Doctor who ordered MRA of the Carotid artery., and MRI of the brain., and all came back negative., he thought allergies also., especially when a couple weeks before these tests he had given me prednisone and a antibiotic for a severe sinus infection., and that took the symptoms away. So he gave me eye drops prednisone. Well things just kept getting worse at times.once the prednisone wore off. The prednisone eye drops did absolutely nothing. , and it just kept on., I went back to the eye Doctor he advised for me to go back to the opthamologist., maybe some other eye drops would help more....So I decided to try a different opthamologist., and that was today., I went to him., I liked his demeanor immediatly., he gave me drops for pupil dilation., checked things out., took a history., and then., he noticed that I tilt my head a little., I never noticed., well then he moved it different ways, up down side to side and at different angles the distortion and blurriness was not there., after some other questions., and his exam., he advised that is was 90 per cent sure I had Myasthenia Gravis., and advised he was sending me for blood work to confirm., and he said once it was confirmed I would have to go to a neurologist., he advised that when I took the prednisone., I felt better., I said yes., I told him when I rested it was better., and how I now have weakness in my hands and arms., etc., he said yes he understood this., I told him I just felt good that he knew what to test for and what he felt it was., as I was starting to feel like I was going crazy when I would have these symptoms which was the majority of time unless I was on prednisone. I have always had excellent vision all of my life., He advised it was muscles., and a auto immune disease., I have now come home and read up on this and I am just so scared., on my ., I just am so scared , I am 57 years old, my husband is very visual handicapped from retinal detachments., and now this.,,,I am going for the blood work tomorrow and he said it would probably take a week as they must send it away. He he felt that was what I had 90 percent sure., ....Amazing to me how, and thank God this man took my symptoms serious and knows what to test for., and realized the severity of my symptoms. But now I am so scared., please help me understand and be less scared.
Thank you.
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Erin
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