Lizzie,


I'm very sorry if my reply made you feel like you had offended me. Not in the least little bit. I hope I haven't offended you.

The thoughts and points you raised were very good ones and something many of us have struggled with and gone back and forth with. That's probably why you got so many responses.

I had often wondered if I was crazy, especially since the neuro locally (and he is the neuromuscular doc around here, but with a bad rep and in my opinion a very weak grasp of mg) was insisting on facts that didn't match anything I had read in the dozens of articles and books I had researched. So, I'm probably super, super defensive and I'm sure that came out.

Anyway, thanks for writing such a thoughtful post.

Ally

In no way did your post offend me at all. Im really sorry to think that I may have offended you in return. I wanted to avoid that at all costs, which is why I put that little bit in brackets. It obviously didn't work. So again no offence was taken and I certainly didn't mean to offend you.

As I said in my previous post I totally understood where you were coming from and I know that there are people out there that for whatever reasons see a bunch of symptoms and believe that they then have the disease.

I am lucky in the fact that the Neuro and my GP will still perscribe mestinon. I have had a long chat with my GP about mestinon and my response to it. His reply was that no one had seen it work for me objectively, but they let me take it as it made me feel better. At the time I was taking 120mg every 4 hours. I asked him what would happen to a healthy person if they took that amount of the drug. He told me that they would probably have a drug induced crisis. I told him I haven't. He couldn't answer me.

When I visit the specialist in Oxford I will be taking my mum with me as I wont be able to get there otherwise as its 3 hours away from me. I am trying a different approach this time and acting ignorant as I dont want to come across as a smartie pants!

Initially when I was diagnosed with MG, I did zero research. I didn't want this disease and if I didn't know anything about it maybe it would leave me to get on with my life. Obviously now with so much time on my hands I have found out more. Unfortunately the more I have found out, the more my symptoms seem to fit. I believe that I have another disease process going on as I seem to be suffering from peripheral neuropathy as well. Either that or they have missed a diagnosis of MS. ( my peripheral neuropathy manifests itself as a feeling in my left foot that the side of it is in cold water and my hands get pins and needles.)

Anyway, like you said Lizzie its time to move on. I like Annie, Ally and Alice don't think you said anythong offensive in your post. It certainly wasn't percieved by me in that way. I hope that we can all put this behind us.

Love
Rach

Lizzie,

I think that you missunderstood me.

so let me clarify what I was trying to say. there are many reasons as to why it is sometimes very hard to diagnose MG, or even know when there is a flare up, that requires change of treatment or just the usual "ups and downs" of this illness. many MG symptoms may be easily mistaken for "something else", usually in the field of psychiatry, even in "classical", seropositive patients.

this has nothing to do with the doctor being "good" or "bad" or with the patient being "good" or "bad". it has to do with the way this illness is.
and the very variable presentations.

the fact that a neuorogist tried to explain those difficulties during a conference is very good evidence for that. as it goes without saying that you would not treat a patient without being sure of the diagnosis. so why even mention it?

do you think that an oncologist during a conference for patients with cancer would say- we are reluctant to give chemo. to a patient without being sure that they actually have cancer? I truly doubt that.

the problem is that many times, this situation is very frustrating for both the physician and the patient. most neurologists do not feel comfortable saying to their patient- look, what you are describing is very typical of MG, your neurological examination may be normal, because we don't really have the tools to asses MG weakness very well, you don't have antibodies, because about 20% of the patients don't have them, your EMG may be normal, because this test is not as accurate as we would like to think, and probably even less useful in seronegative patients like you.

Alice, the reason the expert talked about it, was because a patient asked the question, and he was anwering.
Ally, & Rach,
I didn't feel like you were being offensive, and I knew what you were saying, I was just needing to make sure I wasn't hurting, or causing you any undo stress. You both are so sweet, and are in a very delicate place right now, and I was hoping to let you know it wasn't you, and it was probably for these other reason... evidently, I didn't do such a great job.
Much Love

Lizzie