[Ken0710]

Hello everyone,
My name is Ken and I am new to this forum. I figured I would try it out. I have read several threads and it seems like there are many helpful people out there.
I am 27 years old have had issues for a very long time. My eye issues started when I was very young and although eye therapy made improvements, they have never been normal as far as movement and double vision. It became a bigger issue in 2005 as I was attempting to join the Army and they made it very hard for me to to get in.

At that time it only seemed to be eye issues and MG was never even brought up. After several deployments to Afghanistan I started having more and more trouble controlling my eye movements and double vision. I went to an Opthalmalogist who then sent me to UNC Chapel hill to see a Neuro-Opthalmalogist.
At first he suspected MG but a Neurologist here on base ruled it out after giving me an EMG and some other blood tests. They then suspectyed Chronic Progressive External Opthalmalpolegia (CPEO).

I was then sent to a Neuromuscular Disease specialist who insisted it was MG. I have been through EMG's, blood tests, a biopsy as well as waiting for genetic tests. My Emg's have showed weakness in several areas of my upper body (Neck, Arms, and Face). this helps explain why I get tired quickly, especially since the Army has us doing physical activities everyday.
My blood tests are all negative though to include the MUSK test. My doctor still insists on it being MG saying there are possibilites of the tests not coming back positive. The military is now waiting on my definate diagnosis of MG in order for them to medically discharge me.

I am taking 60 MG of prednisone daily but I beleive my doctor will be lowering that soon. It seems to be helping slightly but not sure. I was wondering if anyone has these similar issues mainly because I have read that a thymectomy is an option to help get rid of symptoms.

I also read though that if you have seronegative MG which it appears I am, the procedure does not work. Others say their doctors reccomend it anyway so I thought I'd ask others. I would really appreciate any information which can be provided. Thank you.
Ken

[Suddenly]

Hi Ken,
Your symptoms sound very much like mine as does your course of testing to find a diagnosis. I went through all the testing and was eventually diagnosed seronegative MG. I had a thymectomy 8 months ago. So far the symptoms are still a problem but are helped with mestinon and IVIG. From what I understand thymectomy is not considered an effective treatment for musk+ MG. With seronegative MG there are antibodies in the blood causing the symptoms, they just have not been identified yet. My personal proof that I remind myself of constantly is that plasmapheresis made me feel almost completely normal. Plasmapheresis removes the plasma and replaces it with healthy plasma, thereby removing the bad antibodies and replacing them with someone elses healthy antibodies. Have you had a CT of your thymus?

I would be interested in hearing more about your eye symptoms. It sounds like you have difficulty making your eyes look where you want them to? One of my first symptoms (along with swallowing difficulties) was being unable to keep my eyes on anything I had to focus on at close range. It took a long time, almost two years, to realize that really was MG.

[Ken0710]

Hello and thank you for the information. I am sorry the Thymectomy did not seem to work but at the same time they say it may take months to years before it does so it can still happen. I have heard about plasma transfer but my doctor has not brought it up yet. They are still waiting for my genetic test to make a definate diagnosis but my military health insurance is making it difficult to get approval. As for my eyes, I have a very hard time focusing on what I want to look at. At times I need to close one eye or both eyes for a bit to regain control. It is extremely frustrating. I wore glasses my entire life until I joined the Army where I was able to get corrective eye surgery which worked great. Last year I had surgery on my right eye to adjust the muscle so my double vision would go away but it made me worse. The Dr. said the muscles in my eyes are practically non-existant. During the surgery I had issues with my heart stopping as well so he does not want to attempt eye surgery again. I have been on prednisone for a little more than a month and my Dr. feels it is helping my eye movement yet it doesnt feel like it to me. I am waiting for the results of my CT scan on my chest. I was supposed to find out last week but my wife and I had a son which led to me canceling my appointment. I asked the Dr. to call me with the results but he has not so that doesn't make me feel so good. He normally calls me to tell me a test was negative. I am to go back Thursday though so we will see.

[redtail]

Hi Ken,

sorry you are going through this at the moment. Are you on mestinon, as I can't see anywhere that you are.
I know all about the waiting for tests results, its hard scary and frustrating.
I've had a thymectomy, its hard to tell if it worked or not, I improved a great deal over the months but if I hadn't had it, would I have made the same improvement??? Iam glad I went through with it tho. I'm not sure about it not working if you are sero negative.
Congrats on your new son!!!
Kate

[Ken0710]

Hello Kate,
Thank you for reply. I am not on mestinon only prednisone. I am glad your sypmtoms are getting better. I will have to talk to my Dr. again about the thymectomy thing but he feels it would be a last resort unless of course my CT scan says differently as far as a tumor. I am sure there isn't because apparently the tumors aren't really linked to sernegative MG but you never know. How did the recovery from the thymectomy go for you?? It is crazy though reading all of the different posts and seeing how those who are having such a hard time with the disease and being 27 years old doesn't make me look forward to getting older. Thanks for the congrats on our son. I am of course nervous now about my son and daughter getting this from me. hopefully it bypasses them. Thanks again.

Ken

[Suddenly]

Ken, congratulations on the birth of your son! What a blessing!

Thank you for the info on your eye symptoms. That sounds similar to what I experience. Though sometimes my eyesight seems pretty good, it changes quickly and I will have blurry vision or not be able to keep my eyes trained on what I need to look at. Very frustrating. Then the latest developement has been double vision. I'm just thankful the symptoms come and go. I would be very cranky if they were here all the time.

My neuro keeps telling me it could take a couple of years to see the benefits of the thymectomy. I didn't have a thymoma but thymic hyperplasia. I had PLEX prior to the thymectomy so I would be as strong as possible for surgery. Surgery was definitely worth the risk. I couldn't not have it and wonder down the line if I should have.

I wonder if your double vision has just always been MG, in which case the surgery probably wasn't going to do much in the first place? I'm sorry it's that much of a problem for you. Once again, very frustrating. And how scary to have such complications with surgery.

I hope you have a good visit with your neuro. Let us know what you find out from your CT. Will you get the results of your genetic testing too?

[Ken0710]

Thank you for the Congrats. You are welcome for the eye information. Thank you as well for the Thymectomy information. I am going to strongly consider the procedure because I to do not want to wonder down the road. We shall see what happens. I won't get my genetic tests back for quite some time. I will let you know how things go on Thursday.

[redtail]

My recovery was as far as I can tell was normal, painful and to me long and annoying but ok in the long run. I had a clear CT scan, no thymoma, but my neuro and I discussed it and thought it was worth a try.
I was 30 when I was diagnosed, it was certainly a reality check, I went from a wonderful job and just starting to get my life together to MG. Although my life has totally changed, I can't work, and am limited to other things I can do, I do get out and do things. At the moment Iam on holiday in Tasmania, taking it easy but thoroughly enjoying myself.
I hope you Dr gets things sorted out soon for you
Kate

[teresakoch]

Congratulations on the new baby! I wouldn't worry too much about the MG being passed along to your kiddos - it's pretty rare, and even though it can be genetically linked, it doesn't necessarily mean they will get it down the line.

However, knowing that you have an auto-immune disease will be an invaluable piece of information for them to have going forward!

Have you ever been tested for Celiac Disease and/or tried a gluten-free diet? You might want to look into that possibility; many people with auto-immune conditions find that a GF diet helps ease some of their symptoms.

I, too, am seronegative - the way my neuro made the determination that I had MG was through a mestinon "trial". Almost nobody BUT people with MG can tolerate even the smallest dosage of Mestinon, so if a person can take it without bad side effects, some neuros will use that to make a "definite" diagnosis in a patient who has many other MG symptoms.

My MG also started in my eyes - I went to see an opthamologic specialist, thinking I was going to get plastic surgery to remove excess fat from my eyelids, and ended up in a neurologist's office instead....

I'm sorry this has happened to you at such a young age, but you probably had the same reaction as a lot of us did - "Oh, so THAT explains why I've been feeling/doing/not doing that..."

Thank you for your service to our country - we are fortunate, indeed, to have fine young men (and women) like you keeping us safe!

[Ken0710]

Hello everyone,
I appreciate all of the responses. Thank you for the Thymectomy information Kate. I will have to talk to my doctor about it some more. With my being 27 years old I think if it is going to happen, it should sooner rather than later. Thanks for the congrats as well. The little guy is doing very well. I definately had that moment of "this is explains a lot". I don't believe I was tested for Celiac Disease but I will bring it up. I will be seeing the doc soon so I will have much to talk to him about. Thank you as well for the military service comments. I am definately proud to wear the uniform but having these issues has made it so that I cannot do much for them anymore. I will have to wait and see how that works out. I am going to try and get a hold of the Dr. todayto talk about some stuff. I am supposed to see him thursday but it is a 2 hour drive and I don't want to have to drag the newborn there. Have a great day everyone.

Ken