Oh hum, doctors are still the same!

[irish]

Well, today I saw a neurologist at the university. My neuro wanted a second opinion to see if there was some way we could get me down in my dose of prednisone. Well, never in my wildest dreams did I think I would have to go through another one of those confrontational doctors visits.

The doctor walked in and basically disagreed with every answer I gave him. he told me I didn't have myasthenia gravis and the more I thought about that the madder I got. If you look up all the info I have all the symptoms. This doc said that with the symptoms I claim to have I should be dead by now. I told him that not everything goes by the book. I would love to get in a big verbal argument but he is used to winning them all.

He also jumped on me for my AIC level being up (6.7) the last time. I nailed him there and it surprised him. I told him of course it it up. My husband just died and that is one big stress. Told him when first diagnosed I got my AIC down to 5.7 and I don't plan on dying soon so I thought I would have time to get my diet back under control. Cripes, some doctors are thrilled if an older patient is 6.7.

Called my neuro and talked to her nurse. Told nurse to tell doc that "I don't have myasthenia gravis". I see her in April and can't wait to see what she says. Have IVIG tomorrow and apt with immunologist who diagnosed me with MG. Can't wait to see what he says about the whole thing.

I left the clinic without making an apt for muscle test and blood work----it ain't gonna happen folks. Irish

[litliwlowa]

sounds like you encountered my "suma cum laude" neuro's "brother". A USDA prime um um um um hamburger (notice I did not say steak)

Here's a question for your regular neuro - why didn't he/she simply pick up the phone to the second one, review your case based on the merits of your medical records instead of sending you in "blind" that way?

This doc said that with the symptoms I claim to have I should be dead by now.

Now that statement would have had me reeling eloquently, walking out the door and shaking the dust off my feet.

Please let us know what your regular neuro and immunologist has to say.

[irish]

With due respect to my neuro, she did not know about any of this I was the one who talked with the U and one of the nurses and set up the appointment with this doc. I emailed my own neuro at work then. Don't know if it would have made much difference cause the one she wanted me to see does only ALS patients now---which was news to my doc. Also,add the swallowing issues to the voice and his theory was that these patients die young. He did not ask ne how bad I was!!

As near as I can figure out this doc today is smart, but he has that one fatal flaw. He has been trained to believe that certain symptons occur in a sequential order---we know that this is always true. HaHa. His big thing was the way I talked (which is the common nasal twange of a myasthenia) and the fact that it started at such an early age. He, of course, forgot to take into account that everyone id different, and maybe, just maybe, my IVIG is helping.

He would have a breakdown over my sjogrens as the dry eyes came last--like about 35 years later. That is not textbook at all. Irish

[warmwaters]

I shake a fist in the general direction of his arrogance.

Sorry you got such a dud. Even if he is smart dud.

[litliwlowa]

With due respect to my neuro, she did not know about any of this I was the one who talked with the U and one of the nurses and set up the appointment with this doc. I emailed my own neuro at work then. Don't know if it would have made much difference cause the one she wanted me to see does only ALS patients now---which was news to my doc. Also,add the swallowing issues to the voice and his theory was that these patients die young. He did not ask ne how bad I was!!

As near as I can figure out this doc today is smart, but he has that one fatal flaw. He has been trained to believe that certain symptons occur in a sequential order---we know that this is always true. HaHa. His big thing was the way I talked (which is the common nasal twange of a myasthenia) and the fact that it started at such an early age. He, of course, forgot to take into account that everyone id different, and maybe, just maybe, my IVIG is helping.

He would have a breakdown over my sjogrens as the dry eyes came last--like about 35 years later. That is not textbook at all. Irish

Ahhh that makes more sense then, her not knowing. I ran into that recently on a recommendation from my gyn for an internal med doc to be my pcp. He gave me two names, the first is not accepting new patients and teh second is actually family medicine but has access to the internal medicine one for consult as needed. But it turns out good and I have already seen him and woohooo he actually communicates very well and doesn't cling to "boxes".

I have found the smart ones around here anyway lean to "House syndrome". Thankfully only three of my specialists suffer with that malady - the rest of my specialists embrace the challenge.

None of us fits into a nice neat little box of "normal". I think in recent years that principle seems to be left out of their education. Some of them anyway.

[Head2Toe]

Irish - you did not deserve to be treated with such disregard and disrespect.  No one does.  I HATE it when doctors diminish patient experiences.  If all we need is a list with check-boxes, doctors would be unemployed. 

Sorry - your experience has triggered the memory of my visit with the Internal Medical Specialist in 2013    It's obviously not a good memory.

Too bad doctors aren't required to spend even 30 minutes reading forums like this as part of their education.  They would certainly learn a thing or two that suggests that not everything is neat, orderly and unfolds according to the most recent medical text book.

[ohiolady]

I am so sorry Irish, you did not deserve to be treated in this manner.  I think we all have had one or more of tnese type of appointments.  It is so frustrating and just makes you angry.

Take care and thanks for all you do here on the boards.

Anna

[Joe S.]

I am sorry you are going through this again. At times like these I often wonder where they went to school. I also understand why they were so defensive about using a computer for Dx in the 1980's. Dr. Was <60% accurate, computer was > 80% accurate. It caused John Hopkins to change how the taught diagnosis.

[irish]

Well, I had my infusion today and my little adventure (yesterday's neuro apt at U of Mn)was the talk of the infusion center. The gal next to me who coughs the whole time she is there was just recently told she doesn't have asthma like she was told. We all had a good laugh over the 2 of us getting IVIG for health issues and we really aren't sick.

Had my visit with immunology and that opinion was that if their(Universitys) neuro clinic didn't make the diagnosis in the first place then it is wrong. That precipitated a discussion on why this happens. The main thing we came up with was ego and it is a way to make money as more testing has to be done. Then of course there is always the legal aspect of things. So it was an interesting day.

Immunology has worked out a plan to slowly taper my prednisone. I am on 20 mgm daily now and they will be thrilled if I can get it down to 20 mgm every other day but preferably 10 mgm every other day. Also having care conference on me and want to try getting me back on cellcept at the 1000 mgm a day dose and seeing how I do. She said some cellcept is better than no cellcept. Will soon know. Irish

[litliwlowa]

Had my visit with immunology and that opinion was that if their neuro clinic didn't make the diagnosis in the first place then it is wrong. That precipitated a discussion on why this happens. The main thing we came up with was ego and it is a way to make money as more testing has to be done. Then of course there is always the legal aspect of things. So it was an interesting day.

I think you nailed it on ego AND a way to make more money.