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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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Profile picture for d_corley43
d_corley43 | @d_corley43 | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
Profile picture for B foreman @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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practicalpainmanagment.com

Dr. Forest Tennant in California is a Arachnoiditis Specialist and will view your MRI'S for free.

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Tbato622 | @Tbato622 | Jan 23, 2020
In reply to @jackiekinney "Hi! I've been suffering for almost 5 years constant back pain with terrible muscle spasms. I..." + (show)
Profile picture for jackiekinney @jackiekinney

Hi! I've been suffering for almost 5 years constant back pain with terrible muscle spasms. I can't stay in one position for long because of the pain. This started right after I had my epidural for my last child. I had to have a c section for both my kids with no problem with the first. I've been seeing my general practitioner for 4 yrs and have had absolutely no relief and they can not tell me what's causing this. I'm a physical therapist assistant so I've always been active and caution with my back but I can not even work. I have difficulty raising my kids because of the pain and barely sleep at night since it wakes me up in terrible pain. I've been searching for years to find out what's wrong and came across arachnoiditis. I get occasional tingling and numbness in my legs but it's inconsistent. Any suggestions?

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Thank you for thinking of me. I went to see Dr. Tennant Feb 5th and I have another appointment March 28th<br />
<br />

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Profile picture for d_corley43
d_corley43 | @d_corley43 | Jan 23, 2020
In reply to @jackiekinney "Hi! I've been suffering for almost 5 years constant back pain with terrible muscle spasms. I..." + (show)
Profile picture for jackiekinney @jackiekinney

Hi! I've been suffering for almost 5 years constant back pain with terrible muscle spasms. I can't stay in one position for long because of the pain. This started right after I had my epidural for my last child. I had to have a c section for both my kids with no problem with the first. I've been seeing my general practitioner for 4 yrs and have had absolutely no relief and they can not tell me what's causing this. I'm a physical therapist assistant so I've always been active and caution with my back but I can not even work. I have difficulty raising my kids because of the pain and barely sleep at night since it wakes me up in terrible pain. I've been searching for years to find out what's wrong and came across arachnoiditis. I get occasional tingling and numbness in my legs but it's inconsistent. Any suggestions?

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  Dr. Forest Tennant in California is the one who I correspond with. Here is his link.<br />
practicalpainmanagment.com<br />
<br />

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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)
Profile picture for Pain disbelief @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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Profile picture for Colleen Young, Connect Director
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)
Profile picture for Pain disbelief @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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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)
Profile picture for B foreman @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>

Jump to this post

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.

REPLY
5 replies
Profile picture for tammylee
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)
Profile picture for B foreman @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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Profile picture for Colleen Young, Connect Director
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)
Profile picture for marilynmeadors @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?

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Profile picture for CharmYaChicago
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)
Profile picture for B foreman @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
Profile picture for Teresa, Volunteer Mentor
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)
Profile picture for Pain disbelief @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.

Jump to this post

@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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