Unexplained Pain

pebbles

Was dx in 6/05, age 46 premenopausal, lumpectomy with clear sentinal node. Stage 1,(1.5cm and .4cm tumors) her2+++, es-, ps-. Had rads and chemo A/C 4 rounds, taxol 12 and herceptin to equal 1 year though needed to stop herceptin early (2months early) due to low MUGA scores.
Stopped herceptin in 12/06 and in 2/07 developed severe pain and weakness. It started with right leg weakness where I would just fall down. No seizures, just leg giving out. Then developed pain in right hip shoooting down left leg toward knee. Had xray (no hip or knee fractures), had ct scans neg and had mri today of lower back to see if discs may be involved. I saw an orthopedic specialist who though it may be a femoral herina. I saw a surgeon who ruled out herina. I am at a stand still am in extrusating pain finished a weeks worth of perocet, valium and motrin 500mg. Viciodin did noting to help with the pain. I don't want any more meds and surely don't want to be addicted to anything. I just want to know what is wrong with me an can't understand why the doctors are letting me fall through the cracks. Could this be mets and the docs don't want to tell me. My onc states it doesn't look like mets but on the mri order sheet she states possible mets. I don't trust anyone anymore. What should I do, I don't sleep anymore since I can't find a comfortable position.,
Thanks for your assitance
pebbles

LittleG

Pebbles,

You need to find out what it is for sure. When do you have the MRI scheduled for? If that dosn't show anything find out who can help, and go see them. It could be something simple and not mets at all. I also have a hip and leg pain in my left leg. I also need to go get it checked out, but I'm not thinking its mets. Maybe arthritis? Try not to let your mind wander and find a doctor that will help you.

g

saluki

Quote:

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Was dx in 6/05, age 46 premenopausal, lumpectomy with clear sentinal node. Stage 1,(1.5cm and .4cm tumors) her2+++, es-, ps-. Had rads and chemo A/C 4 rounds, taxol 12 and herceptin to equal 1 year though needed to stop herceptin early (2months early) due to low MUGA scores.
Stopped herceptin in 12/06 and in 2/07 developed severe pain and weakness. It started with right leg weakness where I would just fall down. No seizures, just leg giving out. Then developed pain in right hip shoooting down left leg toward knee. Had xray (no hip or knee fractures), had ct scans neg and had mri today of lower back to see if discs may be involved. I saw an orthopedic specialist who though it may be a femoral herina. I saw a surgeon who ruled out herina. I am at a stand still am in extrusating pain finished a weeks worth of perocet, valium and motrin 500mg. Viciodin did noting to help with the pain. I don't want any more meds and surely don't want to be addicted to anything. I just want to know what is wrong with me an can't understand why the doctors are letting me fall through the cracks. Could this be mets and the docs don't want to tell me. My onc states it doesn't look like mets but on the mri order sheet she states possible mets. I don't trust anyone anymore. What should I do, I don't sleep anymore since I can't find a comfortable position.,
Thanks for your assitance
pebbles

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Pebbles--Anywhere along the line have you had a bone scan?
That was the protacol with an initial BC dx where I was.
That can show arthritic problems as well as mets.

I've had lumbosacral problems most of my life and and when it flares its excruciating and radiates down my leg and I've been known to not be able to get to the bathroom for 3 weeks. Don't assume its mets. You could have a disc problem or even something strained or sprained and affecting the nerves in the area.

Your Doctor has to write a possible diagnosis or they won't
pay for the tests. And therefore, radiology won't do them.
Most places will not pay for what they call Rule Outs---
So in order for you to get the test they have to put a diagnosis that can be coded and approved. Don't jump to conclusions. Take one step at a time. If nothing shows on the tests consult a pain control specialist. They really know alot more about appropriately using pain meds safely.

Take care
Susie