What is Myasthenia Gravis
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. At about 14 cases per 100,000 (in the U.S.), it is one of the lesser kno...
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I have had MG for 2 1/2 yrs now, im a mother of 1 and he is 6. My problem is my neourologist.I see hime every 6 months and hwen I do go to see him the appt last for 5 min (honestly). He asks me how am i? and do I need any refills?
Just last week I felt so bad, I mean falling outside, not being able to talk, just all around weak. I went to see my dr ( face all bruised up) all he did was ask the same 2 questions and say i'll see you in 6 months. Now my issue with that is it seems as though he doesnt really care, I had to tell him i've been doing research on the thymectomy and then he says something about it. I told him I think we should try increaseing one or some of the medications, I also told him the IGIV wasnt doing anything...so he sends for another one, i dont see the point if there not helping and they are very expensive. Should I be looking for a new doc? Its to the point where my PCP has to call him to see what the update is! Posted on 08/25/09, 10:08 pm |
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My advice to you is to find a new doctor. That is just unacceptable. He should be helping you figure out what you need in order to feel better, not just let you suffer. Maybe he has some master plan that he hasn't told you about, but he should be communicating with you. With my old doctor, I had to be a little proactive with asking for new treatments, but at least he cared and tried things that I wanted to try. I just got a new doctor and she is amazing. She spent 30 minutes with me on the first visit and went through a list of things we are going to try and told me what order we would try them in.
If finding a new doctor is absolutely not possible for you, then I would suggest directly asking your current doctor to spend more time with you and explain the long-term plan. You need to know and you have every right to ask. 
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Thnax mara811, its just so hard because of my insurance and my state only has 3 neurologist, so i guess ill try talking to him and demanding more 1 on 1 communication. Thank You Again!
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Hi shelly. I notice you live in DE. If that's true you are not far from Philadelphia. I live about one and a half hours from my Neuro at Georgetown Univ Hospital in DC. I see him about every 4 months now, so making the drive isn't too bad. He is the MDA clinic director and neuromuscular specialist. I suggest you try to find the MDA director of the Philly area. He is my second Neuro. The first one I had did NOTHING! I am happy I found Dr. Sirdofsky! Have you had a chest Xray yet? If not, RUN to a new doctor. Find one that will work with you and try ALL the options you want to. You need a doctor with a game plan and you need to be pro-active in your treatment.
Best to you.
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Hey Shelly
get a new doctor!! I did the same thing, I had nothing to compare it to. I have made the switch to a doctor at Jackson in Miami and I already see the difference and not in my symtoms just yet, but where I feel comfortable and the time he is taking with me to explain and try new things. My last doctor was a nut and my gut told me that, but I will be the first ti admit I was slow to react because of going through all the tests and explaing all my symptoms until one day I was really bad and he was tellling me something that was the opposite of what my body was telling me. So I said I'm done! and have found this new doctor who I'm happy with. To sum it all up is you might go back a step to go a head two!! Good luck! Tom
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Yep...You need a new doctor.
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Yep.... new doc! I had one that was just paralyzed too, and the nature of a doctor, well, let's say we just have to figure it out ourselves!
I would follow up on the MDA clinic, my experience wasn't so good, yours may be much better! And financially, we all raise money to make sure that between insurance and MDA things are taken care of. Think about your health, if you are falling things are serious now. It is not just daily suffering, it sounds like a Myasthenic Crisis which could sneek up on uncontrolled Myasthenia and could lead to long-term lung respirator dependence. I realize we are all different in how our muscles "fail", but get moving please! This is the unfortunate reality my first nuero left me near, being in labored breathing!! Tough love is my style...cause I've suffered too long.
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Thanks everyone, here's an update. lol wow! I called my dr. and of course I had to talk to his receptionist, she played the middleman. I asked her was the surgery still an option. This morning she calls and says dr townsend wants to send you for an evaluation, which is cool but my thing is if I never mentioned it would they have suggested it. I called my PCP and he is like its about time! Im go for my eveluation on tues sept 1. So we will see!
As far as getting a new dr. sounds good its just transportation that worries me. I want to get an out of state dr SOOOOO bad, @ magda but its just very difficult. My problem is I nedd to stop holding so much in and go for what I know. Not just for me but for my son! Thanx Again!
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me too. I guess all Doctors are buttheads! Im in the process of find another Dr, my current one has no time for me, and It took 9 months for them to dianose me, and I want a doctor that gives a crap
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@heatherboo, its a sad situation, but in delaware its honestly 3 nuero dr here, and im on the 3rd one already. So GOODLUCK on finding a new dr!
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wow, only 3, I guess I should be thanking my lucky stars then with all the choices here. Im sending well wishes you way thats Your MG will go into remission for a while, so you can live your life, I had to change Dr's to just recently cause mine dint give me any time and there office people was so rude but sorry Im rambleing, you take care I wish you the best of luck
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