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Arachnoiditis: Trying to find a specialist

Posted by msaliceinpain @msaliceinpain, May 22, 2016

I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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Welcome to Connect @charmyachicago.

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needrelief | @marlenew | Jan 23, 2020
In reply to @Tbato622 "Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr...." + (show)
@Tbato622

Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr. Lubenow Rush Chicago. Yes epidurals,mylogram, etc do cause arachnoiditis. I live in severe pain every waking moment!! I also have an intrathecal pump implanted in my abdomen. Plz respond. Any recommendations would help. Need support group.

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Hi Theodora, I am excited to read you have a doctor in Chicago because I am in a suburb of Chicago, but then you say you are in pain all the time. Does Dr. Lubenow understand this disease we have Arachnoiditis and that we are truly in pain and would never want anyone sticking any injections in our spinal cord? I am in dire need of a pain management Doctor and miraculously I checked and Dr. Lubenow is on my insurance!!! Does he have problems giving pain meds because I know they are cracking down on these doctors giving narcotic pain meds because of the major drug addiction problem we have in this country. But "we" the ones who truly are in unbearable pain at times and some all of the time need meds just to be able to function somewhat. So I guess I'm asking if you recommend your doctor for another Arachnoiditis sufferer? I am on a Facebook support group Arachnoiditis Everyday that can be helpful with the emotional support and education on this disease, might be good for you to check it out. Any feedback would be much appreciated. Thanks and I wish you less painful days.

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marilynmeadors | @marilynmeadors | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I've read that it is difficult and it takes special tests.

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2 replies
CharmYaChicago | @charmyachicago | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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Find an intractable pain doctor for palliative support

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020
In reply to @marilynmeadors "I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this..." + (show)
@marilynmeadors

I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I've read that it is difficult and it takes special tests.

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Welcome to Connect @marilynmeadors
Here is a link to the American Medical Association's doctor finder https://apps.ama-assn.org/doctorfinder/home.jsp. You can enter your zip code and find a physician or specialist in your area.

Have you considered traveling to one of our Mayo locations?

REPLY
tammylee | @tammylee | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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@bfsecurityguy, I'm just wondering if you've found a Dr. In your area to treat you. I believe I may have arachnoiditis also, and need someone who can treat this.

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Pain disbelief | @busterbrown | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

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5 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020
In reply to @busterbrown "Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis..." + (show)
@busterbrown

Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

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Hi Busterbrown,
Welcome to Connect. I'm also tagging @jlfisher56 on this discussion.
It is difficult to find a good pain specialist who is taking on new patients. While we wait for members to join this discussion with recommendations, I thought you might appreciate this article about Arachnoiditis from NORD (National Organization of Rare Diseases), which includes information about investigational therapies.

How are you managing your pain at the moment?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 23, 2020
In reply to @busterbrown "Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis..." + (show)
@busterbrown

Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

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@busterbrown Here is the link that Colleen referred to from NORD, https://rarediseases.org/rare-diseases/arachnoiditis/ Best wishes you as manage your pain. Teresa

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020
In reply to @busterbrown "Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis..." + (show)
@busterbrown

Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

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Oops I forgot the link. Thanks Teresa.

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