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Old 09-20-2006, 10:15 PM #1
hmmmmmm hmmmmmm is offline
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Default Need Some Advice, Help

My sister has been suffering for the last 6 months, ever since she had a shot to her spine where she lost spinal fluid. She had a spinal headache for 5 days and the doctor was totally oblivious to her pain. Since that time she has had chronic pain, dryness of mouth with sores, dramatic loss of weight, nausea, and now she is losing her hair, along with a host of other ailments. They also found nodules on her thyroid gland. She has never been sick before. She is a total wreck. I called her tonight and we talked for about an hour with her crying the whole time. I told her to go to the Mayo Clinic since she has been to 6 doctors and each one of them tell her they don't know what is going on and then send her on to another doctor or another test. It is the old specialist syndrome where no one wants to make a diagnosis. Does anyone have any thoughts to how she can get some help, some relief? I am worried as is my mother that she is slowly going to just die. We are so worried.
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Old 09-20-2006, 10:29 PM #2
carolynms carolynms is offline
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I am sorry to hear about your sister, and do not know much about a spinal fluid leak, but I may be able to help with the thyroid issue.

The loss of hair could be from the thyroid. I was recently diagnosed with a nodule on my thyroid (found in my pre-op physical before my spine surgery), and had to get blood tests, a thyroid ultrasound, and then a thyroid scan. I have to do it again, 3 months after the 1st tests. Has she had this checked out? Some of her other symptoms could be thyroid related.
She needs to find out if her nodule is functioning with the thyroid, and if it is cold, warm, or hot.
And, sometimes, they biopsy the nodules. My nodule is hot, so no biopsy, yet!
And, she should have a blood test, to determine if she is producing enough of the thyroid hormone, TSH. If this gets too low, it can cause the hair to dry out and fall out, lack of energy and total fatigue, depression, appitite changes, etc. If she has too much (they can go both ways) it can cause weight loss, amoungst other things.
Three of my closest friends have thyroid problems, and they have all shared their info with me.
I hope some others can help with the spinal leak. Keep us posted as to her progress!
Carolyn

Last edited by carolynms; 09-20-2006 at 10:32 PM. Reason: forgot something
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Old 09-20-2006, 10:41 PM #3
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Arrow Stand by your sis with support~

I have had many spinal problems, but never fluid leakage. Has your sister been to a Neurologist or an Orthro Dr? She sure needs one, both are skilled to deal with this. My ortho took my Stimulator out a couple weeks ago. He didn't put it in, but while he was operating on me I ask if he would remove it.
He said if it would cause spinal fluid leakage, he would not do it, but it didn't.
It must cause problems when it does.

I would encourage your sister to go to Mayo Clinic. After a person has been sick awhile and (6 months is a long time) they could give up without some prompting from you. Stand by her and give her support and see if you can get her in.
Blessings,
Fancylady
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Old 09-20-2006, 11:30 PM #4
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This may not fit at all but i wanted to mention it - because you talked of sores in her mouth and weight loss.

There are rare diseases like Pemphigus Vulgaris-

http://www.umm.edu/ency/article/000882.htm
http://www.mayoclinic.com/health/pem...749/DSECTION=2
http://www.pemphigus.org.uk/

you can google for images too if you would like to see if her sores look similar.
Has your sis been to any autoimmune specialists?
What is her age?
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