# of Cases, Nerve Pain, Mayo Study
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First of all thanks to Bill for keeping us all up to date on CLIPPERS. I was diagnosed in June of 2013 at the Mayo and still trying to digest all the information on the site. I would welcome anyone’s response to some questions I have:
1. Any idea how many cases of CLIPPERS there are worldwide? 2. Does anyone else have significant nerve pain? What medicine do you take?My tingling/burning/sensitivity seems to vary a lot and I can’t correlate what increases or decreases the pain. I take 1800mg of gabapentin and 20mg of amitripyline a day. 3. Does anyone have information about the Mayo CLIPPERS study? Thanks for any comments you may have, Terry in Texas |
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Just got this. Glad u asked about mayo study Sent from my iPad
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In reply to this post by Terry
1. I don't know the number of CLIPPERS cases. I do know that is a rare condition among rare conditions. Every number I've heard or seen in studies has been less than one hundred worldwide.
2. My nerve complaints center around numbness and thankfully not pain. I'm not taking anything for these complaints. 3. The FedEx man just dropped off my blood draw packet from the Mayo Clinic study. I'd suggest you contact the Mayo Clinic to see if you can get into the study. I think they will be studying actual outcomes and not offering any treatment advise. That being so, I hope my small contrition can further the science. |
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I spoke to one of the Mayo doctors recently about their CLIPPERS work. I am hoping to soon provide some more concrete information on how readers of the blog can get involved, once some administrative hurdles have been cleared at their end. -Bill |
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Bill,
my daughter has been diagnosed with CLIPPERS , apparently she was 1 of 2 in Canada at the time she was diagnosed in early 2013. She suffers with a lot of different symptoms but most debilitating is her chronic nerve pain which is present in her back and lower legs. Essentially she is house bound which has contributed to a deep depression and other complications. Any insight would be appreciated . |
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Hi Owen,
Since I have significant nerve pain, I thought I would respond to your email. I’m so sorry to hear about your daughter. I was diagnosed at the Mayo in June of 2013. The first couple of months, I had some sensitivity but then developed quite a bit of nerve pain as time went on (mostly back, lower legs and feet). The Mayo neurologist told me that the nerve pain was not generally a symptom of CLIPPERS but must be from spinal cord inflammation when I got sick. Currently, I’m taking 3 prescriptions for the pain: amitripyline, gabapentin and Cymbalta. My doc just added the Cymbalta about a month ago. I’m still not pain free, but feeling much better than a month ago. My activities are still limited and seem to do best if I put my feet up throughout the day. In addition to the amitripyline (which is an old fashion antidepressant named Elavil), I take Zoloft. Although the Zoloft was prescribed for my Pseudobulbar affect (PBA), I can’t help but think it’s helped me from getting depressed. I do hope your daughter starts to feel better, Terry On May 26, 2014, at 1:02 AM, Owen Stables [via CLIPPERS] <[hidden email]> wrote: Bill, |
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Thank you for your reply, I am at work but would like to reply with more questions this evening if don't mind. Thank you, Owen Sent from my BlackBerry 10 smartphone on the Bell network.
Hi Owen,
Since I have significant nerve pain, I thought I would respond to your email. I’m so sorry to hear about your daughter. I was diagnosed at the Mayo in June of 2013. The first couple of months, I had some sensitivity but then developed quite a bit of nerve pain as time went on (mostly back, lower legs and feet). The Mayo neurologist told me that the nerve pain was not generally a symptom of CLIPPERS but must be from spinal cord inflammation when I got sick. Currently, I’m taking 3 prescriptions for the pain: amitripyline, gabapentin and Cymbalta. My doc just added the Cymbalta about a month ago. I’m still not pain free, but feeling much better than a month ago. My activities are still limited and seem to do best if I put my feet up throughout the day. In addition to the amitripyline (which is an old fashion antidepressant named Elavil), I take Zoloft. Although the Zoloft was prescribed for my Pseudobulbar affect (PBA), I can’t help but think it’s helped me from getting depressed. I do hope your daughter starts to feel better, Terry On May 26, 2014, at 1:02 AM, Owen Stables [via CLIPPERS] <[hidden email]> wrote: Bill, If you reply to this email, your message will be added to the discussion below:
http://clippers.12400.n7.nabble.com/of-Cases-Nerve-Pain-Mayo-Study-tp73p84.html
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Certainly. Typically I go to bed early so if I miss your email tonight, I’ll respond in the morning.
On May 29, 2014, at 5:35 PM, owens23 [via CLIPPERS] <[hidden email]> wrote:
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Hello Again Terry,
My daughter was excited that you had replied and had a couple of questions. She
would like to know what your Neurologist felt your prognosis would be in regards
to the nerve pain, will it respond to treatment or eventually improve on its
own. Nicole is taking wellbutrin as well as gabapentin both at fairly low
doses, she wonders at what dosage did you start noticing an improvement? She had
an negative experience with amitripyline causing a severe depressive state and
is very careful about side effects as a result.
regards, Owen.
From: [hidden email]
Sent: Thursday, May 29, 2014 3:44 PM
To: [hidden email]
Subject: Re: Mayo Study Certainly.
Typically I go to bed early so if I miss your email tonight, I’ll respond in the
morning.
On May 29, 2014, at 5:35 PM, owens23 [via CLIPPERS] <<A
href="wlmailhtml:/user/SendEmail.jtp?type=node&node=86&i=0" rel=nofollow
target=_top link="external">[hidden email]> wrote:
If you reply to this email, your message will be
added to the discussion below: http://clippers.12400.n7.nabble.com/of-Cases-Nerve-Pain-Mayo-Study-tp73p86.html
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