Gonna cry-more tests

[kathylee]

I thought I was prepared for more waiting but she actually said she needed to do the single fiber emg to get a positve test before considering anymore treatment. She had said people do have MG that dost test positive but then contradicted herself with this. Also adding to this was her recommendation that I REDUCE my mestinon!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I said what about my breathing...it isnt even handling it fully now and I am too far away to get here in event of a crisis..........She wanted me to go clear back to 60mg 3x a day!!!! I am at 75mg 4x a day.  These kind iof things after explaining how much worse I am. ALSO she said I need to stop my medication before the test...not just the morning of but the nite before! That is 2 missed doses again when I am in a differnt city!!!! At least the resident I had before said I should come and hang out the morning of the test in Iowa City incase I did get worse. I AM SCARED!!!!!!!!!!!!!!! This is the new muscle neuro I had hope for...hope ahe would jump in and do IVIG. And I have to wait till next week to get this test. My job is history. Is she one of those doctors that thinks this is all in my head? Obviously me being better on mestinon is not proof to her.
gottta go ...gotta let myself cry....been holding it back since doctors...
Kathylee

[navydad]

These are th things in life that want to make us just curl up in a ball and forget about everything and just give up,, BUT,, ou do have a voice in your treatment,, and make your voice be heard,, if you think cutting back will make you worse,, tell them,,, be asserative,, I;ve learned to do that,, get downright nasty with them if you have too,, always remember,, YOU knw yourself better then they do,,

[kathylee]

navydad,
thanks.......took some action..called amd left amessage with docs nurse-line saying I am too weak at this point to drive that far and my daughter is not available like today...so in lite of this and being off the meds so long which could put me into a myasthenic crisis like before why not admit me to the hospital the nite before. What she is asking me to do is very risky. If I have a worse myasthenic crisis I could end up intabated and being fed thru a tube! THIS IS NOT ACCEPTABLE! I realize things were said that indicate she is questioning if my breathing issue in from my sjogren and or panic attacks. The previous resident I had would never have suggested such actions! He did hospitalize me for a med change. I think I need to get my pulmonologist on board.
Kathylee

[irish]

kathylee, Sounds like this new doc is not using her head at all. You do not take someone off of their mestinon unless they are in a regulated medical situation.

Also, you can have a negative EMG and that will not give you a diagnosis. My EMG was negative along with some of my blood work for years. It is so eary for people to think that we are just being panicky. You are darn tooting we are being panicky---only we are being panicky about the way they are interpreting our medical condition.

The fact that you were treated for breathing issues should be proof enough. Also, sjogrens is not going to have the same kind of breathing issues as MG. My doc diagnosed me without a positive EMG or a positive acetylecholine blood test. I had the super high antistriated antibodies plus a lot of symptoms. None of the symptoms were considered severe but when you added them together they added up to MG.

I hope that you can find a doc who will pay attention to you. At this point if it was me I would avoid the EMG cause it is not worth any risk. Many people with MG have negative results. Good luck and rest. For your information, a person can have MG like symptoms from taking too much Mestinon, but generally before that happens the gut acts up and people will get diarrhea.

If you are doing better on the 75 mgm 4 times a day that should be proof enough for you. I don't know who orders your mestinon, but there is a long acting one that can be taken at bedtime and then a person isn't as weak in the morning. I have not tried that yet in spite of my doc wanting me too. I go to my neuro tomorrow and I will probably get in trouble for this. Good luck. Irish

[JannaLee]

Kathylee,

Hats off to you for standing up to the new clueless doc!

I still would warn you not to get beat down by her and talked into doing something dangerous.

It isn't clever when a doctor resorts to "emotional" diagnosis, it is lazy and shows an appalling lack of respect to the patient.

If at all possible take someone big and strong or at least LOUD with you to your next appointment.  I always take my husband or son to advocate and support my statements as factual and then also to insist on things when needed.

It is a shame we have to plan out a defensive strategy when we go to the bloody doctor's office!

You are in my thoughts, dear one!
JannaLee