Saturday morning and having speech issues
I talked to my neuro yesterday and he said that the nerve test they did on Tuesday was supposed to have been done by him. He's blaming his staff. However, he said that the nerves involved do not have anything to do with speech or chewing. He thinks it's a psychotic (not sure that's the right word) reaction and that I should see my PCP which I will be doing on Monday. She, however, has no experience with MG. He's trying to fit me into his schedule on March 7 because I have lots of questions (assuming I'll be able to speak to ask him!). Right now I'm chewing my oatmeal in the hopes of getting it down. I've lost 4 lbs. since Tuesday. I'm overweight so this is a good thing in that respect and bad in the fact that I can't eat. Neuro suggests also a speech therapist because maybe they'd have an idea of where it came from!!! He told me that MG, if it starts to get worse, would start with the ptosis getting worse and my eyes, other than watering, are staying open with the Mestinon, So he thinks maybe anti-anxiety meds might help (can't hurt for me at this point -- or can it?). He says speech issues would come with chewing issues (they are) but that my hiatel hernia could be causing this. I've got bad indigestion from the Mestinon (and probably worrying). Normally, I would have taken Maalox (no more). So I'm adding Zantac to my pantoprazole in the hopes that will help. Quite frankly, I think I'm going to double the Zantac and get rid of the pantoprazole all together. I wish I could have a really loud belch -- nothing gets rid of this feeling.
I feel like my life as I knew it is gone. I'm so scared I won't be able to enjoy my first grandbaby in September. I'm so scared I won't be able to talk to people or communicate at all except through the computer. I'm furious that my neuro thinks this is probably all in my head when I can feel the difference in my speech. It comes and goes during the day. Usually I can talk until I start to eat. Then my speech changes. If this gets worse this weekend, I'm thinking of going to an emergency room -- then a neuro will see me when I hang an MG sign around my neck.
Coincidence is not causation -- or something like that is what they told my sister when she had a reaction to the shingles vaccine. Only it turned out it wasn't coincidence and it was causation. I'm convinced the EMG caused either my MG to get worse or the EMG fried me enough to cause the changes in my hernia and nerves. What I hate is people telling me it's all in my head. The anxiety is caused by the way I feel. How can I set a goal for this?
I feel like my life as I knew it is gone. I'm so scared I won't be able to enjoy my first grandbaby in September. I'm so scared I won't be able to talk to people or communicate at all except through the computer. I'm furious that my neuro thinks this is probably all in my head when I can feel the difference in my speech. It comes and goes during the day. Usually I can talk until I start to eat. Then my speech changes. If this gets worse this weekend, I'm thinking of going to an emergency room -- then a neuro will see me when I hang an MG sign around my neck.
Coincidence is not causation -- or something like that is what they told my sister when she had a reaction to the shingles vaccine. Only it turned out it wasn't coincidence and it was causation. I'm convinced the EMG caused either my MG to get worse or the EMG fried me enough to cause the changes in my hernia and nerves. What I hate is people telling me it's all in my head. The anxiety is caused by the way I feel. How can I set a goal for this?
Replies
I\'m sorry you had a side effect or reaction from the EMG. I and the others that answered your post feel that it was the stress of the EMG that cause your new symptoms. I say decline of Mg. I hate to tell you this. But it doesn\'t sound like your neurologist or the doctor that treating you for mg knows that certainly speech and chewing is a very serious symptom of Mg. You might want to find someone who is in mg specialist who can help you. It is not uncommon for neurologist to not be familiar with MG. You are not the only one who\'s had trouble getting a doctor to understand and help you. If your breathing gets really laborious, then you probably need to go to the ER. Also, be aware that medical personnel a lot of times do not know anything about mg . It\'s really hard for us to be so sick and then have no one understand how they treat us or the seriousness of our disease . That\'s why you need to learn all you can and be your own advocate and try to explain to the medical people that you will come in contact with you can search discussions on any topic at the top of the page on the homepage of DS. You need to rest rest rest. Mg can get worse quickly,. I\'m not trying to scare you I just want you to be aware. As far as ptosis, I never had severe ptosis. I have generalized mg and I\'ve had very weak breathing chewing and extreme muscle weakness in my arms and legs and neck and core muscles. When I do have trouble with ptosis it\'s both my eyes completely shut at the same time. Sometimes, I feel my left eye pulling shot, but it\'s really not visible to others. So, I don\'t have the typical ptosis. We are called snowflakes for a reason because we all have different symptoms. Doctors want to put us in a box and be able to treat us and understand our disease but it\'s just not does not work that way. I don\'t mean to be so negative. I always try to be positive and encouraging. But I am sure that others will agree with me on this. I\'ll be praying for you. Take it easy and please stay in touch
My Dr. is with the University of Cincinnati\'s Neuroscience Institute and I chose them because they are the only doctors in the city that deal with MG. My Dr. was supposed to do the EMG and his procedure is different than the one that was done. He\'s not too happy with his staff and neither am I. However, I had planned that if I didn\'t like him for whatever reason, I would try getting an appointment with the head. The trouble is it takes so long to get in. He did two fellowships in muscles and nerves at the Mayo Clinic which is one of the reasons I chose him. However, if I find him condescending, I may change. It\'s just so hard to do when you need treatment NOW.
It\'s weird because right now, everything this minute is fine other than the everpresent GERD issue. But things change so fast. Hopefully, when I see him in person, he can allay some of my fears. I also may switch PCP\'s to one who has some knowledge of MG so she knows when to ask for help from the specialist.
I\'m calm right now -- this evening might be different. I hoping I can learn to cope with all this without freaking out about every little thing. I\'m going to try to go for a (short) walk to burn off some angst.
Thanks for responding -- it means so much to me and I\'ll send some prayers your way also.
Thanks for prayers. :-)
It sounds like you have a plan. My neuro studied under a well known researcher for MG, it\'s still so compmicated, and if don\'t they listen , it makes life tougher. I\'ve thought of changing neuros too. We do the best we can, and we can only take one day at a time. I hope you enjoy your walj. :-)