Those who can´t take steroids, why?

[southblues]

If a drug makes me worse, I am not going to take it. Over the years, I have had so many weird diagnosis for weird diseases that I actually didn't have, that I have decided that I am going to have the final say until I am too old and senile to do otherwise.

So if the prednisone makes you worse, I would not take it if it were me. Please don't suddenly stop taking it though. It can take months to safely wean off of it.

In my experience with treating dogs, I have found that the every other day treatment makes for a MUCH safer time during drug withdrawal as opposed to daily use. The idea is that your adrenal gland has one day to work between dosages and it doesn't get so "lazy".

[Anacrusis]

Originally Posted by alice md

This combination requires (off course) quite a bit of bad luck and a fairly ignorant neurologist.

In a nutshell, what would a really outstanding neurologist have done differently in your situation, Alice?

Originally Posted by lynned0

Hi to everyone who posts on this site.
Lynne

Hi to you to!
Not being able to dress and being totally out of breath pulling a sweater over my head is something I remember also...Good luck at the neuros

Originally Posted by southblues

In my experience with treating dogs, I have found that the every other day treatment makes for a MUCH safer time during drug withdrawal as opposed to daily use. The idea is that your adrenal gland has one day to work between dosages and it doesn't get so "lazy".

Southblues,

Your connecting and transferring of ideas via your work with animals is quite fascinating!!! When I first was googling my way around trying to make sense of my symptoms I would often end up reading about dogs & MG and horses (if I remember correctly) And to be honest, for some reason or other, it seemed that that info was much clearer and hit home and I sometimes picked up some extremely useful and well written info where I otherwise I might not have


Anacrusis

[alice md]

In a nutshell, what would a really outstanding neurologist have done differently in your situation, Alice?

I would say-a reasonable (not outstanding) physician would have A. put a close eye on a patient who keeps on saying that she is doing worse (instead of better) with treatment. B. trust what she says unless they have very good and proven reasons not to. C. make sure that even if they are not able to be physically present they receive accurate data (without interpretations) from the most competent and experienced residents and nurses. D. definitely come in when they are called and not trust a resident who tells them that there is nothing seriously wrong when they receive very different information from a close and reliable relative. E. Not discharged a patient who has episodes of un-measurable vital capacity and requires frequent respiratory support without a review of her condition with a respiratory physician. F. Definitely not write a letter to her GP saying that she is in remission and does not require any medical assistance or intervention when discharging her in such a condition. G. Definitely not put a big "?!" on results of supposedly accurate tests that show that he is seriously wrong in his clinical assessment.

I think (and also told him) that what he and his team did was on the verge of malpractice. I don't think the limitations of neurology justify this. In fact I think that such an inaccurate field requires that you be much more cautious and humble in front of your patients. If you have no clue of how to assess respiratory insufficiency and have no understanding of the proper interpretation of respiratory tests, how can you take upon yourself to decide that there is nothing physically wrong with your patient?

[ginnie]

Your post was one of the best I have read here on NT. If only physicians would really pay attention, and or admit when they don't know something. thank you for this response. ginnie

[southblues]

It is apparently hard to sue a doctor if there is not a clear, easy way to diagnose a condition. I had a doctor almost kill me, and the one lawyer that I talked to said that you would have to have absolute proof that what he did caused the problems, not just that he was an incompetent clown.

[Anacrusis]

Originally Posted by alice md

If you have no clue of how to assess respiratory insufficiency and have no understanding of the proper interpretation of respiratory tests, how can you take upon yourself to decide that there is nothing physically wrong with your patient?

Exactly........

Thanks so much for sharing.

Anacrusis

[Tracy9]

Steroids exacerbate my MG, as they do for a certain percentage of MG'ers.

[Tracy9]

I asked a respiratory therapist the other day what a normal NIF was. She was obviously completely clueless, and said "I am not sure...yours is 55 and that's fine. We're used to seeing people who are like 10 around here." I was thinking, really? Because I would think if they were at 10 they would probably be on a vent. And since it took them half a day to dig out the NIF since they rarely use it here...I doubt they are used to seeing 10's around here! Get a clue!