Neurologist concerns? I have them.
I'm frustrated.
I was diagnosed with MG 2 years ago when I was beginning a crisis. My eye drooping and double vision perplexed the best of them til my ophthalmologist told me I needed to see a neurologist because it was likely that I had MG.
I'd love to know more about MG-diagnosed people's experiences with their neurologists. Mine is proficient in medicinal treatment, but he doesn't seem to believe my fatigue or lack of strength (not weakness), and dismisses instances like dropping things as not MG-related. This lack of understanding is a source of frustration for me.
I'm very frustrated because I could feel better and have a better quality of life.
Hi David75,
Thanks for your random thoughts. Many will be helpful. Prednisone, not so much. I was on Prednisone for 8 months after Crisis. It got me back to a liveable state, albeit I did come back 60 lbs heavier and less handfuls of hair.
I could breathe but I went into a terrible depression. I can't do that again.
I'm curious about what other people with MG feel.
How do you feel?Thank you so much for your reply. I really appreciate your understanding and empathy I do have a question. Why fluoxetine?
I was prescribed Fluoxetine and I broke out with hives so while maybe unusual, there can be side effects. Yes. Rash and erythema nodosum are known possible side effects, Too bad. I'm sorry for your bad reaction. There are other anti-depressants that might work better.
I am so sorry. I understand your frustration and have some advice. First, yours is a common complaint, and changing doctors may not help. I have a wonderful neurologist who has treated dozens of MG patients, and I love him to death. But MG is the snowflake disease, different for each of us, and Doc does not begin to understand all the implications. During our appointments, I mostly educate him.
What you must understand: On the MG journey, you are the pilot, not the passenger. Nobody is going to fix you. Nobody is going to take care of you. Nobody knows how. Educate yourself. Watch all the You Tube videos. Devour the articles available on this site, Live in the forums like this, communicating with other sufferers, just like you are doing. You need to establish reasonable goals for your treatment, measure your progress against those goals and share with your doctor how you are doing. Being well again is not a reasonable goal. Having enough energy to get through a productive day without fatigue IS a reasonable goal. Unloading the dishwasher without dropping a plate IS a reasonable goal. An acceptable level of energy and strength can be achieved through a good medicine regimen. And your frustration can and should be treated with something like fluoxetine. Once you demonstrate you know what you are talking about, your doctors will allow you more control of your treatment. He's the one with the prescription pad. Make him use it.
All that having been said, you must exercise some patience. Two years is enough time to feel like you are on the right path, but not necessarily enough time to be where you want to be. Getting your immunosuppression right, with an effective level of steroid boost, if needed, is all trial and error. It takes time to get it right, and progress might be interrupted by a flair or two. Hang in there. Know that many others share the same issues and you are never alone. MG will not allow you a normal life, but you can have a happy and fulfilling life.
Thanks for this. I think part of my frustration is because, except for the crisis I experienced, I have felt this way for as long as I can remember and no medication has helped me feel any different. I don't know how I'm supposed to feel. The weakness I experience - perhaps that's the best I'm supposed to accept; same with my shallow breathing and very periodic swallowing problems.
Maybe my neurologist is a good one. I truly have no idea. I just know that when he tests me, I can do the tasks he asks because I'm encouraged to push myself through the appointment tests. I'm exhausted for days after my appointment and could never sustain that level of exertion daily. I'm constantly fatigued anyway.
The results of these tests are what he bases his 3-month evaluation of my MG severity on.
Is this how it is for most people?Yes. Neurology appointments exhaust me. The exercise is good for me, but it is draining and takes time to recover.
All the feelings you have are very normal for someone just two years into treatment. Here are some random thoughts:
- Be patient. If you truly get beaten down by always feeling the same, suggest to your doctor that you do a four-week prednisone burst (40 mg, then 30, then 20 and then 10.) It will often give a big energy boost and improve your mood. It's like a vacation from sickness.
- Being ill is not the same as being unhappy. You will always be short of strength, but you will learn tricks and routines that make everything easier. Accept your physical limitations but understand that your life is otherwise unlimited and filled with possibilities. Seek happiness and fulfillment over wellness.
- Read the forums and connect with MG people. You'll discover you are better off than many. Keep your sense of humor. Find the book "Myasthenia Gravis: The owner's manual."
-Embrace friends and family. Keep social engagements. Make sure your friends understand your illness and that while you can't go for a hike with them, you'd love to join them for cards. Be sure your friends know you still value their friendship and won't shut them out.
- And smile.
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