Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I recently had a very unpleasant experience with a doc at another hospital which really had me feeling down for quite some time. I was diagnosed about 1.5ys ago, have been on prednisone, cellcept (which I had to stop after 8mos), monthly plex and have had a thymectomy. I adore my neuro. He diagnosed me quickly because of his significant experience with MG (I am antibody negative but was diagnosed by EMG). I was wheelchair bound for months and now am doing much better. Not great - but better. I am able to go to work but am a ltitle too tired to play with my kids at night. Various body parts still don't work from time to time.
Because I am in a major city with lots of academic centers, I have been fortunate to be seen by 3 docs with MG experience who have all been in agreement. My neuro and I decided that rituximab might be a good choice for me. We are having a hard time getting it approved by the insurance company and as a result I started doing a lot of homework to help and learned the literature. I contacted someone who has published experience with the drug. He was very kind in emails and a phone conversation but when I went to see him, he questioned my diagnosis, he questioned my neuros experience and asked if I was going to choose him or my regular neuro and was very aggressive. Very aggressive for a good amount of time. Spent a while talking negatively about my neuro who I love and whom he doesn't know. I stopped trying to get a word in edgewise and just retreated. I have been in a funk ever since. Hard to imagine I let one guy have such an affect on me - but I will come back swinging soon! I sincerely hope everyone has positive experiences with their docs. This disease is bad enough - "with friends like these...."
Nicole
Because I am in a major city with lots of academic centers, I have been fortunate to be seen by 3 docs with MG experience who have all been in agreement. My neuro and I decided that rituximab might be a good choice for me. We are having a hard time getting it approved by the insurance company and as a result I started doing a lot of homework to help and learned the literature. I contacted someone who has published experience with the drug. He was very kind in emails and a phone conversation but when I went to see him, he questioned my diagnosis, he questioned my neuros experience and asked if I was going to choose him or my regular neuro and was very aggressive. Very aggressive for a good amount of time. Spent a while talking negatively about my neuro who I love and whom he doesn't know. I stopped trying to get a word in edgewise and just retreated. I have been in a funk ever since. Hard to imagine I let one guy have such an affect on me - but I will come back swinging soon! I sincerely hope everyone has positive experiences with their docs. This disease is bad enough - "with friends like these...."
Nicole
When I was pregnant with my second child, I saw a "substitute" doctor who didn't run down my regular doctor, but my weight gain. With hormones on board, I was no match for the overweight bully. He insisted I come back in a week (I had recently been eating canned soup for lunch, he didn't ask). In the waiting room, I met another pregnant woman who weighed 85 pounds when she got pregnant, she was small like me, you could tell her ribs were countable as were mine. She took one look at me and asked which doctor I was seeing. We were there for the same reason! That helped, but I cried for two weeks! Hormones!!
Why do so many neurologists have such egos? He doesn't have a corner on the Rituximab market, but it is hard to get it approved, even if you are getting IVIG or PLEX weekly--insurance companies can be very short sighted, too. I hope things work out well!. b.
Consider the following. There is a huge financial aspect - to Rituximab, and practically any other medical treatment.
These days, doctors are sometimes seen first - as a source of revenue, either for their personal practice or their hospital.
As you have probably learned, Rituximab is proving itself with a variety of different illnesses (including RA). It is a treatment, gaining in favor all the time.
I can't speak directly to the use of Rituximab, but I know from personal experience - that Rituxan is a VERY pricey treatment.
This aggressive harangue that you received? I have experienced a fair amount of this sort of thing, myself.
Similar to yourself, it really threw me for a loop. Until I figured things out.
Plain and simple, it seems that you were getting an aggressive (and aggravating) sales pitch. All being done - in an attempt to switch your ''lucrative business'' to another location.
The Neuro that you adore? You should tell that Neuro, about this experience.
I had a similar ''aggressive'' experience, with a stent-doctor, at an out-of-state facility. This stent-doctor was aggressively attempting to recruit me for stent work, literally 1-hour before I was being discharged from the facility. All being done, to circumvent the decision of the Head of Cardiology, at this facility.
This aggressive stent-doctor told me: Don't worry about any other doctor here. You will become MY patient, under my care - and there is nothing any of these other doctors can do about it.
Doctor Stent: even made use of a Assistant, who dressed very provacatively, wearing extremely low-cut street clothes, to deliver her own personal sales pitch. (She made several private appearances, beyond Doctor Stent.)
I asked Doctor Stent to write up his recommendations, and to include them in my discharge papers, and I would go over them, in the next few days.
He never did.
But he snidely said to me, as he left my hospital room, ''Have a nice life. I hope you live. But I doubt it.''
I told my Neuro, about this experience. Several months later, at a routine follow-up appointment, I again asked about this stent-doctor. I was politely told - that the doctor in question - had moved on, and was no longer associated with the facility.
- Ross
I also had another doc tor roll his eyes at me when I mentioned fibrobyalgia. That's another story.
Also my GP kept questioning my neuro's DX of MG becase I was seronegative.
I forgot about this one: I had a GP once tell me that she was going to let me "figure it out" simply becaus I like to ask questions and understand issues related to my visit.
I guess we have to keep our chin up and be thankful for the doctors who will listen to us.
When I asked my first neuro why I got myasthenia he said "Just karma". I will never forget it. When I asked him were there side effects to the drugs I may need, he said " Horrible, horrible side effects". I wish I had been strong enough to walk out. Now I wonder if he talks to all his patients like that.
I'm sorry you've had this experience but so glad you know how great your own neuro is. Thank goodness there are good ones out there.
Best wishes
Gez
I'm new here but wanted to let you know I am so happy at your progress from the wheelchair to work! Progress in your symptoms don't lie but people do. I'm sorry to say the 2nd neuro seems to be lacking character. Sorry you had to go through this!
Your progress speaks volumes for the tx your current doctor has worked out for you. I like others here have had success with tx from one doctor that was blasted as not important by another doctor.
I recently tried seeing a neuro who said if I was his patient he would take me off of pyrodostygmine never mind the fact I was dependent on supplemental oxygen 24 hours a day before being able to wean off it completely once on pyridostigmine....never mind the fact I was having trouble walking across a room and driving without pyridostigmine. Some doctors have hidden agendas and others seem not to have the experience needed to recognize and treat someone with seronegative myasthenia. It is best to be able to see red flags when you see these types of behaviors and learn to extract yourself immediately. There are many stories here of similar experiences that will help you not internalize this as your problem but help you realize it is in fact the problem of that particular practitioner.
I am so happy you have had such good progress and hope for even more! Marie