Hello
 

Hi, My name is Codie I am a 23 yr old female from Austin TX. I just wanted to say hi to everyone. I was diagnosed with MG alittle over two years ago. I refuse to get my thymus removed and I am in a study in San Anotonio TX. The study is to find out if the removal of the thymus is really needed in cases where there is not a tumor on the thymus. I have generalized MG. When I was diagnosed with MG I had already had every symptom in the book to the point where the bottom part of my lungs were no longer expanding. I had to have IVIG treatment and be on prednisone for a year. Two years of treatment and I am as normal as normal could get when it comes to MG. The only medication I take is half a pill of 60mg mestinon when i need it. I am very happy to of found a forum to where I can talk to other people with MG. I have never met another person with MG. EVER! I hope I can learn from other people and help anyone who needs it.

Welcome Codie, As for me my breathing is real bad right now and eyes and throat. I am interested in what you said about your breathing. To know and live with this breathing and not get stronger treatment is painful and has caused much loss of faith in medical system. I assume you have a pulmo since you seemed to have such detail on your breathing. Can you tell me how it was determined that your lungs were doing that? Was it true that at that point you were in a wheelchair or near to it? I was told by Mayo that my breathing being this bad, and that was 2 years ago was not consistant with MG. I shouldnt have been walking at all in their eyes.

Glad you are here.
Annie59:winky:

What is a Pulmo? I have never been in a wheel chair. Sorry if this sounds weird but at that time I didnt even know that my lungs were doing that. I went to my first neuro appointment and she put me in the hospital the next day. At the appointment I was told that the bottom of my lungs were not expanding. It is really my fault I worked myself up to that state dragging out the idea that I was even sick. By the time I went to the neurologist I couldnt hold a glass of water, run, I wasnt able to chew really at all, I saw double and it seemed like there were shadows everywhere. My vision was a mess. I could sleep all day and would wake up still tired. My eye was drooping. God I was a mess. You should of seen my trying to drive. My eye lids would get so tired that I couldnt really keep them open. It is amazing that i never had an accident. I started to get really light headed at night when I would walk around. About that time is when I saw my neurologist for the first time. I started with an IVIG treatment in the hospital. I was also started on mestinon and prednisone. I was in the hospital for about two days. I started getting my strength back on the first day. It was nothing like wow im normal but it was better then when I started. lol

Opps. Sorry I didnt mean to abreviate given you are new here. I was new here and actually still pretty new and ran into abreviations. My poor vision and brain mush have me doing it more than I used to.

Pulmo is pulmunologist or lung-breathing doctor. I have a wonderful one. If not for him I would have no medical doc that really advocated. I would be afraid far more on a day to day basis than I am. That was an important piece of my puzzle as other wise with just the weakness for years it would have been alot easier to just say Chronic fatigue. But with my breathing that became less possible. AT least for me and my pulmo. It was deeply affirming to get the restrictive breathing disorder diagnosis. It was real. I knew it was but now I had a name. I'd constant incidents when my breathing would flare and get worse and even once in the ER when I felt harrassed because it wasnt the basic copd, heart or asthma. The nurses kept saying, "so you dont have an inhaler?" And of course when its not those 3 they go quickly to anxiety.

Annie59

Hi Codie - - Welcome!!

Sounds like you have responded really well to treatment - - that's terrific! Did you end up with any lung damage (hope not) or did they recover as well?

Re: the study you are in...can you tell us more about it? Have any conclusions been reached yet? Who's doing the study?....etc.

Would be greatful for any info you can share.....Thanks!

I do not believe I have lung damage. I do not have a pulmo. The issue with my lungs was caused by my weakness.
The study I am going is in San Antonio TX. I go to the UT Health and Science Center. The study is being done all over the country. They need 200 participants. The study has recently reach 100. One of the first forms of treatment for mg is the removal of your thymus gland. Neurologists believe that is the core cause of the disease. Most people with MG will have a tumor on there thymus gland so the removal of it is inevitable. But there are a percentage of people that do not have the tumor. Even though there is not a tumor on the thymus gland neurologist still believe one of the first forms of treatment is the removal of the thymus gland. The study I am in is to help determine if this form of treatment is necessary. When you join the study you will either be chosen for the removal of the thymus or for you not to have your thymus removed. I was chosen to not have it removed. Thank god! You will see a neurologist on a monthly basis and will be able to contact them or their nurse to update them on your progression when needed. When you see them they will run multiple strength test and breathing test to determine where you are. After a few months of this treatment they will bring in a blind evaluator. The blind evaluator will be another neurologist who will not know what part of the study you have been chosen for. It is really on going and the study is about three years. The study is still going and I will not know if anything was determined until the study is closed.

koilover,

The information I was given by my neurologist and that I have learned from personal research is different than what you stated above. My neurologist only recommends the thymus removed if there is a tumor and he said that only a small amount of people with MG have a tumor (I think he said less than 10%).

I don't have a tumor in my thymus gland and its removal was never discussed.

It seems to me that different neurologists have different opinions about how to treat MG.

I don't like having a disorder that has so many unknowns and so much confusion around it.

I agree that I do not like how there are so many unknowns. It is like the doctors are just playing a guessing game with how to treat you. We can only hope that one day there will be a cure.

I'm not sure on the numbers for how many people have a tumor on their thymus or not, but there is definitely controversy about whether to remove the thymus if there is no tumor. I was pushed towards getting my thymus removed by my first neurologist, even though I don't have a tumor. Unfortunately there's just not a lot of solid research out there about treating MG. It's mostly based on retrospective studies. They're trying to fix thatby doing more clinical research, and there are a number of randomized controlled studies currently being done, including the thymectomy trial that Codie is in. There's a website for that study - unfortunately I can't post the link because I don't have enough posts, but if you do a google search for "MGTX study" it should come up.

If you want to find out about other MG trials, go to the clinicaltrials.gov website and do a search with myasthenia gravis as the key word. There are 5 or 6 (or more) currently recruiting, and several of them involve new drugs.

I just want to add a caution here about tumors on the thymus. My CT scan and MRi didn't show a tumor either, but when I had to have some swollen lymph nodes biopsied and they were going into my chest, I had them remove the thymus also (being as they were there anyway). This was 5 years after diagnosis. Turns out I had a Stage II malignant tumor in my thymus. Fortunately, they got clean margins, but I had 28 radiation treatments, just in case.

So a tumor doesn't always show up on traditional testing.