Quote:
Originally Posted by MysteryPainMom
Thanks Kathy,
She seems to be a little bit better this morning. She didn't sleep much last night.
We are working hard to get her a definite diagnosis, all while trying to make sure that we don't do anything to make matters worse. Since the diagnosis on the prescription for the PT was sensory polyneuropathy, I don't know what differences there might be in treatment. I will ask the PT next time we go so that I can find out what she knows about it.
I see so many people on here that have had this for years, and many didn't get a diagnosis for years. I want to do my best to keep things from going to the point of no return before someone decides what the best treatment is for her.
She has many of the symptoms, but there are things that we have not seen yet, such as feet turning in etc. I really want to keep it from going to that extreme.
She has an appointment at the end of the month with a doctor at University of Michigan. Hopefully he can get a handle on this. For the time being, we are trying to keep her moving because I know that if she doesn't it will get worse.
I really love this forum, there are so many wonderful people and so much helpful information here.
Thank you again,
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Mom (for short)...
AND we love having you with us on this forum....this place is my glue...
I know with my aggressive PT..I would not sleep the night before in anticipation as it was just murder pain..Two big berley guys beating on my RSD leg..Forcing it to bend the furthest possible and everyday a bit more and more.. Heck, when I would leave the place eachday, I had complete strangers clapping for me..And due to the extreme pain, I would have trouble recalling how to even exit the place...
Yes, please pursue a definative diagnosis soon and in the mean time..keep her moving thru the pain as that is trully important or the pain could freeze her up...Remember, we do not always exhibit every symptom or sign, just another added bonus of our crazy illness. I am cold turkey RSD without pain meds as I have a bad tummy and nothing stays where I put it... I wish you much luck with getting your answers..At this time, I think discussing the PT intentions would be a good idea and continue to move forward being your daughters advocate..She will do well as long you are looking out for her...bless you both and please lean on us to help you...Weeez family here..
Hugz, Kathy
