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Old 05-14-2013, 10:47 AM #1
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Default Cleveland Clinic Visit

Hey everyone. So for all the people who were trying to help me out a few weeks ago and wanted to know how my appointment at cleveland clinic went ....here is the result. It was pretty much a waste of time.

He has decided he does not think I have MS which is good, he had bloodwork done to check heavy metals (including copper deficiency) and i will get those results in a few days.

He suggested maybe redoing my skin biopsy there at the clinic because the numbers were low (just not low enough to call it SFN) but I said that for now I didnt want to do that (just had it done 6 months ago so maybe after a little while longer).

So in the end he said what every doc has : he doesnt know what is causing the problems...

And he increased by gabapentin dose to 900 mg 3X per day (From 600 mg 3X per day) in hopes that this will help. I will let you all know results from heavy metal test when they come in.

Thank you all for your insight and advice
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Old 05-14-2013, 11:29 AM #2
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Good luck with everything, I hope the results of the heavy metal testing are good. I am getting a heavy metal test done as well, but I don't believe it included anything for copper. I will ask my Neuro about that. Was it a urine screen or a blood sample? As far as your experience with the Cleveland Clinic, I had a similar one as well. I was diagnosed with MG back in 2008 and the Cleveland Clinc is a place I went to that said I didn't have anything wrong with me. I think they're just like most doctors and most don't tend to think outside of the box. Good luck with everything
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Old 05-14-2013, 12:06 PM #3
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Thanks for reporting in Boiler.

Stay with us, we'll just add you to the loooong "wait and see" list.
Chicken Doctors..
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Old 05-14-2013, 06:58 PM #4
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strizzlow20 - it was blood test. and yeah my experience at the clinic was pretty frustrating...

SallyC - thanks I will def. let you all know if anything changes.
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Old 05-14-2013, 11:03 PM #5
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boiler, what is SFN?
sorry you didn't get the answers you needed. hopefully down the road you will.
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Old 05-15-2013, 09:06 AM #6
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Nancy - SFN is small fiber neuropathy. When I was tested for this the numbers I had to be compared against (the standards) were for people older than me (they have no data on my age group) and my numbers for epidermal nerve fibers were already considered low (but not low enough to be in the bottom 5% of the standards data). I will probably have the biopsy redone in a year or so if I continue to have problems.
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Old 05-19-2013, 09:12 AM #7
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hey everyone,
I got the heavy metal screening back which revealed I was normal for arsenic, lead, and mercury levels in the blood. I realized that the copper levels werent in the final report, contacted my doc and guess what? he didnt realize that copper was not included in this screen!

So long story short, had my blood drawn again friday and I will let u all know what the results say for COPPER when i get them back!
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Old 05-23-2013, 03:40 PM #8
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So i called the doc office today and they say my copper levels are normal. Dont know what to do at this point the 2700 mg/day of gabepentin doesnt stop symptoms in the heat and has been making me dizzy.

My doc said something about cymbalta but i read that it is used for diabetic neuropathy (and i am not diabetic). Has anyone else tried cymbalta for nerve pain?

Thanks
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Old 05-23-2013, 06:08 PM #9
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Cymbalta is an AD. A selective serotonin and norepinephrine
reuptake inhibitor antidepressant (SSNRI). I have no idea why
it is indicated for pain? Maybe because it's an SSNRI and not
just an SSRI, as my Prozac is??? You'll have to ask the Scientists.
The black box says, it may raise suicidal tendencies.
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Old 05-27-2013, 07:14 PM #10
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Personally I think using an anti depressant to control pain is a bunch of bologna.
If you are depressed and have aches and pains of depression, then maybe then it would help.

Glad you don't have MS and that the tox screens were good. But I understand how frustrating it is to walk away with no answers.
Hang in there..
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