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Originally Posted by AnnieB3
It sounds like your doctors have been very thorough. Has anyone though about circulatory issues like Antiphospholipid Antibody or endocrine issues like diabetes? I believe I mentioned those before.
Has your internist looked at this from a different angle? What if it's not something you can "see" on imaging but something like a vitamin deficiency?
Can you think of anything other than the onset of muscle weakness that could have happened before it all started?
Sometimes while doctoring, you might never find an answer. However, assuming it's MG without doing - like you said - a Tensilon test (which can cause greater side effects) or using Mestinon can be dangerous too.
I'm almost getting the sense that you're afraid of going blind. Do you have a "hidden" fear like that making anxiety worse? If so, it helps to talk about that with someone. And, yeah, sometimes it does help to talk to a psychiatrist. No, I am NOT saying your symptoms are in your head!  Though your doctors seem to have ruled out your structural head as the issue.
There are so many things a good therapist can do for you. There are "tricks" to help get you out of the panic phase and into a calm phase. Meditation is one. The feelings of anger and panic can't exist at the same time, so feeling more empowered is good.
I do think you should feel reassured that you've had such a thorough work-up.
I do have to disagree about the focus issue. With MG, you have binocular double or blurry vision and when you close one eye, that goes away. It's a physics issue. If you have one source of focus, weak muscles don't matter. Your eyelid can close more and the field of vision could be less. But unless you have other eye issues like astigmatism, you should have clear vision when you close that one eye. Do you need reading glasses?
Some people are more sensitive to light. What color are your eyes?
I hope you can have a good conversation with people on Monday so that you are more reassured. In the meantime, only you know what is truly causing so much anxiety. Is it the sight issue itself or an underlying fear?
Whatever is going on or not going on, I'm sure your doctors will help you! They've ruled out some pretty big causes.
One other little odd bit of info is that recent research has shown that a reduced amount of acetylcholine can be a contributing factor for migraines, as can channelopathies. So maybe having some consistent dosing of Mestinon would help. It would definitely help your MG!!
Hang in there!
Annie |
Annie,
I think you're absolutely correct about a lot of things here. I do have a big fear here. I have been checked for systematic illnesses and vitamin deficiencies and MS seems/seemed more likely with the vision issue I am experiencing but my doctor thinks MG may be playing a part as well. He told me and my girlfriend that MG and MS can happen together and it may take some time to see lesions on the brain if this is what I am having. Trust me when I say my vision is distroted and not like blurred or double vision. My fear is that I do have MS, and if I do, then I would like to try some treatment. My memory is not good and I have also noticed that I feel like my coordination has been off but not enough to the eye of a neurologist. It could be stress related, but I noticed these things prior to the vision issues. I guess my big fear is that if I have the progressive form of some illness such as MS, my vision is going to continue to get worse. My mental state is awful as well and I am worried that this has been impacted by this illness. I am stressed/depressed/scared all at the same time. I've been down this road before with the MG diagnoses. I was told they were in my head and no one bothered to check anything. It's like I am reliving the experience all over. I am going to reach out for counseling because it's hard doing this on my own and I KNOW that the mental battle is just as important. Regardless of what is happening, if I can't ignore these symptoms and just be happy, then I am going to feed ANY illness. I have a heavy metal test that I am starting Monday. You guys are right about a lot of things here and I appreciate you responding to me. I'm just frightened which I think most people would be in my case. I'm not happy about a waiting game.
As far as a trigger, the night before this happened I had a really bad episode (like a panic attack) and I couldn't sleep. The next morning I felt dizzy and I was off. My balance wasn't good and I noticed the distorted vision issue during a meeting at work while looking at a carpeted pattern. I thought it was just stress so I didn't say anything to anyone. Friday came and I still noticed my vision issue and I couldn't look at patterns without them shimmering and lookign wavy, so I said something to my girlfriend. Then that is when I went through the process of seeing an Optician, Neuro-Opthamologist, ENT, and Neuro. My neuro is awesome I'm just struggling to keep my composure and there is a part of me that is starting to wonder if I really am going crazy. I'm just tired
but I have to dig deep for happy thoughts. My GIRLFRIEND is amazing and was with me through the MG issues. We will be together 6 years in June. Another fear I have is that I am going to deteriorate and not be the same person mentally and physically. I don't want her to see me like that either.