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.

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

Hi. I remember how scary it was to first think I had this disease. But the more I learned, talked to others with the disease and found a neurologist who was excellent and kind, the less fearful I was. MG can be a life-threatening disease but you can do a LOT to help yourself, along with your doctors.

I'm glad you found a doctor who took you seriously. It sounds like he was very thorough.

Not everyone has Acetylcholine Receptor Antibodies (binding, blocking and modulating), which is probably the blood test he is running. Some people have the MusK antibodies and some don't have any (or they haven't found more antibodies yet).

A neurologist will probably want to do some kind of EMG (needle test) on your muscles.

Did you say you were on Prednisone? Prednisone can alter the results of the blood tests and EMG's and make them look normal. Also, most doctors begin patients who are relatively okay on Mestinon (not a steroid). It's a drug that helps get you more of the "muscle juice" called acetylcholine (ah-seat-ill-co-lean). Prednisone also can give you lots of side effects like pred-induced diabetes, glaucoma, brittle bones/less dense bones, etc.

Go to www.myasthenia.org and read up. Being well-informed will really help. Things like lack of sleep, stress, infections, etc. can make MG worse. Some drugs can too. Heat can make MG lots worse, so staying cool is important.

I'm not going to kid you. MG can be very serious. It's different for everyone. Drugs can help but how you manage your day and activities can help just as much. Like doing things when it's cool outside and not doing too much at once. Don't push yourself when you are feeling weaker. Always communicate with your neurologist (or pulmonologist) if you are doing worse.

If you have MG, you really need a pulmonologist. My pulmy is the one who monitors my breathing. If I'm worse, she checks my pulmonary function, especially what's called MIP and MEP. They can show if your chest wall muscles are getting weaker. So it's good to find a good pulmy and have baseline readings done. They are often the ones who monitor how you are doing in the hospital during what's called an MG crisis, along with the neurologist.

Not everyone gets an MG crisis!!! It's when your breathing or swallowing or generalized weakness gets to the point of needing assistance like oxygen, Bi-Pap or Intubation. Don't let that scare you!!! I've only had one MG crisis (though many "near" ones) and there are many things that can be done for you, like Erin said.

I hope I'm not being too overwhelming. You don't even know for 100% certain that you have MG yet. At least for me, knowing as much as I could about MG was actually reassuring. I hope you do get answers soon and then get a VERY GOOD neurologist to help you!

Annie

I took 16mg prednisone last Monday , March 22, and 8mg on Tuesday March 23, and 4mg on Wednesday March 24 For nasal congestion for sinus problem., I am haveing the blood work tomorrow April 2,., So I should be okay.

Hi. I remember how scary it was to first think I had this disease. But the more I learned, talked to others with the disease and found a neurologist who was excellent and kind, the less fearful I was. MG can be a life-threatening disease but you can do a LOT to help yourself, along with your doctors.

I'm glad you found a doctor who took you seriously. It sounds like he was very thorough.

Not everyone has Acetylcholine Receptor Antibodies (binding, blocking and modulating), which is probably the blood test he is running. Some people have the MusK antibodies and some don't have any (or they haven't found more antibodies yet).

A neurologist will probably want to do some kind of EMG (needle test) on your muscles.

read up. Being well-informed will really help. Things like lack of sleep, stress, infections, etc. can make MG worse. Some drugs can too. Heat can make MG lots worse, so staying cool is important.

I'm not going to kid you. MG can be very serious. It's different for everyone. Drugs can help but how you manage your day and activities can help just as much. Like doing things when it's cool outside and not doing too much at once. Don't push yourself when you are feeling weaker. Always communicate with your neurologist (or pulmonologist) if you are doing worse.

If you have MG, you really need a pulmonologist. My pulmy is the one who monitors my breathing. If I'm worse, she checks my pulmonary function, especially what's called MIP and MEP. They can show if your chest wall muscles are getting weaker. So it's good to find a good pulmy and have baseline readings done. They are often the ones who monitor how you are doing in the hospital during what's called an MG crisis, along with the neurologist.

Not everyone gets an MG crisis!!! It's when your breathing or swallowing or generalized weakness gets to the point of needing assistance like oxygen, Bi-Pap or Intubation. Don't let that scare you!!! I've only had one MG crisis (though many "near" ones) and there are many things that can be done for you, like Erin said.

I hope I'm not being too overwhelming. You don't even know for 100% certain that you have MG yet. At least for me, knowing as much as I could about MG was actually reassuring. I hope you do get answers soon and then get a VERY GOOD neurologist to help you!


Hi Annie,
I took 16mg of prednisone on Monday March 22, 8Mg of prednisone on Tuesday March 23, 2009, and 4mg on Wednesday March 24, 2009., I am getting my blood work tomorrow April 2, So I think I should be fine and the prednisone should not be a problem., what do you think? You are not being overwhelming I need to know things., it was amazing to me that the opthamologist made the diagnosis and ordered the blood work, and he says depending on the confirmation., I will then have to go to a neurologist.

Good, good, good! That med really may have skewed your blood work........This should help you in the rigth direction!!!!!!!

Everyone has varying degrees of MG, but again, it can be controlled! I darn near lost my life cuz' I was in denial and no one would listen to me until I had to be in the ICU for a week - so sad.........not able to BREATHE @ all for over a minute.......scariest time of my life!

PLease let us know what the doc says!!!!!!
Erin

REally, truly! IT can wipe you out in a matter of minutes!

Hi and welcome to our forum.

Annie and Erin have covered the majority of the information, but I wanted to chime in that opthalmologists do diagnose (dx) MG quite often. I just saw one for a non MG problem, and he informed me that he catches it quite often! You're very lucky to have seen this particular doc, and hopefully he can refer you to a good neurologist that he knows is very familiar with MG.

As Erin and Annie said, along with the meds the most important thing you can do is learn to manage your energy and strength. Please don't make the mistake that most of us probably have and try to overpower this disease. The hardest thing for me was to figure out that trying to carry on as usual or "push" myself through a task after I felt the weakness increasing was the WRONG way to handle this disease.

Don't be afraid, with a good doc, proper treatments and the support of your new friends here, you'll be able to manage this disease and carry on a good life.

I am 52, have had MG for 13 years, at least, and had gotten to a point where I was off ALL the meds and functioning almost normally before an unrelated medical problem caused me to have symptoms again.

Best of luck with the test and finding a good neuro - . You're ahead of the game in my opinion so I have faith that things will go smoothly for you. Hop back on and ask as many questions as you feel you need to anytime. Someone will always be here with help and support!

I appreciate all of your help and information I have a question, my one eye., has alot of floaters and more blurry than the other is this from that also? It just seems it is so hard to diagnose., and that some Doctors don't take you serious., I am so glad that I found the opthamologist that I did, and go from there., I thought I was going crazy., when I would tell people about blurred vision etc., it is like the previous optha just gave me refresh drops., but it never went away., only when I took prednisone for allergies., I knew something was wrong as this very much affected the way I could see things/, so I just kept pursuing., and I feel relived to know what it is but scared as to what can happen as it seems this is unchartered territory and mostly trial and error with things., but I have to accept whatever and find a good neuro who is like this opthamologist ., and rely on all of your help., I am so glad I found this board.

If you rid yourself of the myasthenia first, most of the rest of your problems will fade away. Myasthenia is a miserable affliction and most people don't do what they need to do to make it go away...and your doctor may be the locus of the problem!

I was so severely debilitated by myasthenia four years ago that at times I couldn't walk, talk, dress myself, eat, swallow medication. I was in the worst decile, statistically for the disease. I was put on an immunosuppressant and a small dose of prednisone. I went through 17 rounds of plasmapheresis. One year ago in December, I went into a week-long coma.

It wasn't until I started on MASSIVE doese of prednisone that I finally felt I could live. I started on 100mg per day on the "on" day and 50 or so on the "off" day. I immediately responded. I am now like normal and I was at the bottom of the barrel for MG victims.

If you suffer ANY MG symptoms anymore, you may need to give this regimen a whirl. Many of the immunosupressants are worthless. DO NOT, I repeat, DO NOT listen to your doctor. Most are clueless about treatment of MG, even the finest and most studied of neurologists. Do not take no for an answer. 100 mg of prednisone will probably not hurt most people (though, they too, have side effects and you WILL need to taper and wean yourself off), but, the flipside is you may have a chance at recovery. Yuo must pull out all the stops and wage war against this miserable disease.

From,
Bottom of the barrel