My daughter is VERY concerned about what the doctors will do if my muscle biopsy comes back negative. She is afraid I will be so sick like this with no treatment. We talked this morning and I was surprised even with the new neuro coming on and my lung doc more heavily involved this is her fear.

I guess I cant imagine the biopsy being totally negative as I am disabled but , there is always that but. What if they get the wrong piece of tissue, the wrong pathologist, the slide is mishandled.

I dont like to think about it as I need to stay in the moment but she is so concerned what do I tell her

Annie59

Annie,

I hope that others will correct me if I'm wrong--because I'm new at this--but my impression is that when you're obviously sick and the doctors can't find a cause, they send you out to another expert.

Also, when it gets to the point of diagnosing the really tricky stuff, experts will differ. My neuro told me the other day that there was no reason for him to give me another SFEMG, but that if I go anywhere else, to expect that they will give me another one. He says there's so much "art" involved in the interpretation that a new doctor will often want to "see for himself."

So if you get a "negative" on the biopsy, it is not the end of the road for you. It just means the road is longer than you'd hoped.

Abby

I agree. It took me 2.5 years before my old docs finally see that I have a problem and I'm not imagining it, nor is it a result of mental/emotional stress or fatigue. I've had to show up with extreme spasticity and foot drop with ankle turned inward before he sat up and acknowledged that its an unusual case. Now he's admitting me on 11/11/10 for a week of tests with a special note to call him when I am admitted. Lol. Somehow feel I'm seeing the light at the end of the tunnel! HE himself admitted during my last visit that sometimes the tests can b negative but it doesnt mean I dont have that disease...

Annie59,

Abby is right, so many tests can come back negative. That's one of the mysteries of this crazy disease. For as much as they know there's that much more that's yet to be discovered.

I'm sure your daughter is as scared as you are, it's very frustrating not knowing whats going wrong with your body, or that of someone you care about so deeply.

Keep the faith, stay STRONG,
Rachel