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Old 12-31-2012, 04:39 PM   #1
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need help soon

I'm new here so I hope there is someone out there who will read this and might have some advice.

I began having pain on the left side of my mid back area, about level with t9 around 14 months ago. Within two months a burning itching *****ling sensation, (doctors call it dysesthesia) began radiating from that spot and eventually covered my whole back, arms and legs, and sometimes stomach. The sensation never stops either, its congruent with the pain.

I have had epidural steriod injections, rf ablations, trigger point injections, used every drug on the market (neurontin, lyrica, cymbalta, amitryptiline, celebrex, klonipin, doxepin many I can't remember) Nothing relieves the pain or itching. I spent two weeks at the Mayo Clinic and they were unable to determine the source of my problem. They said they had never seen anyone with these symptoms before. All imaging and tests showed no real cause for what's wrong. I'm seeing a neurologist, physiatrist, gastroenterologist and a internal medicine D.O. in the next two weeks at the advice of the Mayo staff.

I can hardly fathom that someone can have pain in one spot constantly for this long and no doctor can diagnose a cause. I'm losing my life slowly, more and more each day. Has anyone out there ever heard of anything like this. Any suggestions would be welcome.

 
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Old 12-31-2012, 05:51 PM   #2
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Re: need help soon

Welcome to the board.

It is bad enough to be in chronic pain when one knows the reason for it....and that much more frustrating when you go to one of the top specialty clinics in the country and they cannot diagnose you.

I'm afraid I cannot offer a suggestion, but I wanted to welcome you to the board.

I assume you were tested for MS, brain abnormalities, diabetes, Lyme disease, etc. I assume this started prior to you having the epidural steroid injections, right? It may be that if no one can find an underlying reason, you will just have to be treated for the symptoms. If that turns out to be the case, you may want to add a pain psychologist to your list of providers. A good pain psychologist can help in learning how to handle the challenges of dealing with chronic pain.

 
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Old 12-31-2012, 05:57 PM   #3
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Re: need help soon

Quote:
Originally Posted by hw59 View Post
I'm new here so I hope there is someone out there who will read this and might have some advice.

I began having pain on the left side of my mid back area, about level with t9 around 14 months ago. Within two months a burning itching *****ling sensation, (doctors call it dysesthesia) began radiating from that spot and eventually covered my whole back, arms and legs, and sometimes stomach. The sensation never stops either, its congruent with the pain.

I have had epidural steriod injections, rf ablations, trigger point injections, used every drug on the market (neurontin, lyrica, cymbalta, amitryptiline, celebrex, klonipin, doxepin many I can't remember) Nothing relieves the pain or itching. I spent two weeks at the Mayo Clinic and they were unable to determine the source of my problem. They said they had never seen anyone with these symptoms before. All imaging and tests showed no real cause for what's wrong. I'm seeing a neurologist, physiatrist, gastroenterologist and a internal medicine D.O. in the next two weeks at the advice of the Mayo staff.

I can hardly fathom that someone can have pain in one spot constantly for this long and no doctor can diagnose a cause. I'm losing my life slowly, more and more each day. Has anyone out there ever heard of anything like this. Any suggestions would be welcome.
I'm sorry you are in so much pain. I've been living in pain myself, and just want relief. It sounds simple, but unfortunately not. My Husband has a condition (not back related) that he's been fighting for quite some time now. He's been hospitalized 3 times, seen several doctors yet nobody could figure out what's wrong. Now with my back issues, it's rather comical.
Good luck, and I hope you get some answers.
Christie

 
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Old 12-31-2012, 06:26 PM   #4
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Re: need help soon

Thanks for your post. I was diagnosed with Lyme disease in 2009. Found a Lyme literate doctor and spent about eight months in treatment. Checked in with the Lyme doc right at first, not an active infection. I wish it were, then I would recognize the symptoms and know what to do.

 
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Old 12-31-2012, 06:37 PM   #5
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Re: need help soon

Quote:
Originally Posted by hw59 View Post
Thanks for your post. I was diagnosed with Lyme disease in 2009. Found a Lyme literate doctor and spent about eight months in treatment. Checked in with the Lyme doc right at first, not an active infection. I wish it were, then I would recognize the symptoms and know what to do.
That's what he suspects, and because their aren't any LL Dr that will take his insurance, so he's treating himself. He's gotten much better, but still having some issues.

 
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Old 01-01-2013, 10:32 AM   #6
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Re: need help soon

Patients develop dysesthesia because there are lesions somewhere in the nervous system. I was under the impression that a person can develop dysesthesia months or even years after the initial issue -- that a person could have been treated from Lyme disease, not have an active infection, and could still develop symptoms of dysthesia.

That's one reason it is so difficult to find the cause of the dysthesia. Some event may have happened years earlier than is now forgotten and that seems completely unrelated to current symptoms.

Did the doctors at the Mayo Clinic fully explore Lyme disease as the source of your pain? I assume they did a full spine work-up, spinal tap, etc.?

 
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Old 01-01-2013, 11:19 AM   #7
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Re: need help soon

They were aware of the Lyme issues, but did not do a spinal tap. They did all kinds of immunology blood work and nerve testing. Lyme diseases I found out is a topic most doctors recognize but are afraid to embrace. I've been to my LLMD to make sure we weren't missing something. She said no Lyme, but of course your right about the dysesthesia showing up later. If that is the case, treating the Lyme again won't relieve the symptoms so I guess it just takes me back to treating the symptoms anyway. The problem here is that Lyme doesn't cause pain in one focal area like this. At least not in anyone I encountered going through the treatment for it. It is systemic so if I had widespread dysesthesia and no focal back pain it would be different. I'm going to go back to my Lyme Doc anyway to have her check again. Thanks for your reply.

 
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Old 01-01-2013, 02:03 PM   #8
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Re: need help soon

I'm just kind of brainstorming...trying to think of something that might be related. I guess you really don't even know if what you have is dysesthesia.

I mostly just post on the boards pertaining to the spine. It has been surprising to me over the years to read of some pain issues that arise from spinal procedures -- not always surgery...sometimes injections, things that are an assault to the central spinal canal...things like complex regional pain syndrome and arachnoiditis.

I assume you have had MRIs of the spine, right?

 
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Old 01-01-2013, 02:59 PM   #9
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Re: need help soon

yes, mri with and without contrast. All you ever get is a printed report at the Mayo, you never actually get to see the mri your self. I've asked for copies to be sent to me but they haven't come yet. I really wish this was a distinct spinal issue, at least then someone could say... this is what did or didn't work for me. Right now I have no diagnosis, and every doctor says , "I can't treat you for something I can't see."

 
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Old 01-01-2013, 07:04 PM   #10
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Re: need help soon

Did you have anything that showed up on the MRI or was everything fine?

 
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