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.

@bfsecurityguy

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.

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Anyone familiar with Arachnoiditis?

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@meatmouth1

Anyone familiar with Arachnoiditis?

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Hi @meatmouth1,

You may notice that I moved your discussion and combined it with this existing discussion on Arachnoiditis because, as @johnbishop mentioned, it would be beneficial for you to be introduced to the many members who have discussed this condition.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

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@bfsecurityguy

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.

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I am so desperate too! Everyday i deal with this pain! I just can't believe that there's no cure or relief for arachoiditis! Any help is desperately needed!

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@ginpain

I am so desperate too! Everyday i deal with this pain! I just can't believe that there's no cure or relief for arachoiditis! Any help is desperately needed!

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Hello @jimaem, I saw an earlier post talking about Dr. Forrest Tenant and his treatment for Arachnoiditis so I did a search and found that he has some information that may be helpful.

Pain Management – Patient Self-Help – Patient Instruction Guides:
http://foresttennant.com/?page_id=27

A link on the above linked page – Arachnoiditis Basic Handbook for Practitioners, Patients & Families (PDF)
http://foresttennant.com/foresttennant/wp-content/uploads/2018/06/AA-Basic-Handbook.pdf?v=June2018

Hope this helps.

John

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@bfsecurityguy

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.

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Are you a part of any of the support groups thru Facebook?
I know and understand what you are dealing with as I too have been dealing with this for just a little over a year. The feeling of despair tends to rule my day more than anything other than the pain. I understand and hope you look into the groups, I'm not much help right now because I don't know how I keep going to bed and waking up, but there's a ton of support. Arachnoiditis and Arachnoiditis Everyday are in the search on Facebook. I have been told there is no fixing, just learning to manage.

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@johnbishop

Hello @jimaem, I saw an earlier post talking about Dr. Forrest Tenant and his treatment for Arachnoiditis so I did a search and found that he has some information that may be helpful.

Pain Management – Patient Self-Help – Patient Instruction Guides:
http://foresttennant.com/?page_id=27

A link on the above linked page – Arachnoiditis Basic Handbook for Practitioners, Patients & Families (PDF)
http://foresttennant.com/foresttennant/wp-content/uploads/2018/06/AA-Basic-Handbook.pdf?v=June2018

Hope this helps.

John

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He actually just retired too. So sad. I hope she looks up the Facebook groups, they can help, and point her in the right direction on a Dr.

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@colleenyoung

Hi Tbato,
I’m so glad you responded. Did you see that a new member joined Connect? @JeyLei posted a message here https://connect.mayoclinic.org/discussion/no-where-to-turn-for-answers-this-is-the-story-of-my/ Recent test results show that his wife has an arachnoid cyst.

I think he would appreciate having someone to talk to. Would you please consider clicking the link above and writing him a message?
Thanks
Colleen

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@colleenyoung
I would like to join AA group on FB. Please advise on how
to join. Thanks. @toiolinger

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@toiolinger

@colleenyoung
I would like to join AA group on FB. Please advise on how
to join. Thanks. @toiolinger

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Hi, @toiolinger – Mayo Clinic does not host any facebook groups on arachnoiditis, but others may know of some. However, I'd really hope you'd stay here on Mayo Clinic Connect to talk with some of the many members posting about arachnoiditis, like @JeyLei @lconroy @ginpain @meatmouth1 @cj1010 @galady @caklady @geezappeal1 @annmaria @tepping8382 and others here in this discussion in the Connect Brain & Nervous System group who've talked about arachnoiditis, or in this discussion in the Connect Chronic Pain group, https://connect.mayoclinic.org/discussion/arachnoiditis/.

I noted you mentioned you will be going to see a doctor about symptoms similar to arachnoiditis to get a confirmation of your diagnosis. When will you be going? How is your pain today?

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@bfsecurityguy

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.

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Hello to everyone. I am new to this forum and found it just by chance online trying to do some research on this awful disorder. I was diagnosed with Arachnoiditis in early 2015 and was simply told there is no cure just pain management. Unfortunately I am at my wits end with the pain and discomfort not to mention how it has turned my life as well as my family’s life upside down. Not only was I diagnosed with this disorder I was also diagnosed with Myasthenia Gravis which is just as rare. I am desperate to find a doctor that not only can treat or help me but that is actually familiar with both of these disorders. I was a registered paralegal and have been unable to work in over 3 years due to the pain. Most dsys I cannot even get out of bed. I am tired of dealing with all the issues of taking pain meds with no relief in site. I was an extremely active person, abid boater and scuba diver. Nowadays I can barely even walk. This is a condition that you have to have to know how intense the pain is. Please if anyone can point me in the right direction I will be forever grateful!

Liked by donfeld

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@ginpain

I am so desperate too! Everyday i deal with this pain! I just can't believe that there's no cure or relief for arachoiditis! Any help is desperately needed!

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Hi @jimaem I know exactly what you mean!! I can’t understand with all the medical advances that we have in our wonderful country how there cannot be some sort of treatment other than pain meds to help us that live with this debilitating disorder.

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@bfsecurityguy

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.

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Hello @ginpain, welcome to Mayo Clinic Connect. There several other active discussions here on Connect that may provide some information and members to connect with to share symptoms and treatments.

Groups > Autoimmune Diseases > Myasthenia gravis (MG)
https://connect.mayoclinic.org/discussion/myosthenia-gravis/

Groups > Autoimmune Diseases > Myasthenia Gravis and Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/myasthenia-gravis-and-stiff-person-syndrome/

Groups > Chronic Pain > Arachnoiditis
https://connect.mayoclinic.org/discussion/arachnoiditis/

I tagged other members who like you @ledgerwp @asw417 @Tbato622 were looking for a doctor specializing in Arachnoiditis. @d_corley43 strongly recommends her doctor in California. You may wish to connect with them.

@stoaway, have you found any treatment that helps with the pain?

John

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@johnbishop

Hello @ginpain, welcome to Mayo Clinic Connect. There several other active discussions here on Connect that may provide some information and members to connect with to share symptoms and treatments.

Groups > Autoimmune Diseases > Myasthenia gravis (MG)
https://connect.mayoclinic.org/discussion/myosthenia-gravis/

Groups > Autoimmune Diseases > Myasthenia Gravis and Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/myasthenia-gravis-and-stiff-person-syndrome/

Groups > Chronic Pain > Arachnoiditis
https://connect.mayoclinic.org/discussion/arachnoiditis/

I tagged other members who like you @ledgerwp @asw417 @Tbato622 were looking for a doctor specializing in Arachnoiditis. @d_corley43 strongly recommends her doctor in California. You may wish to connect with them.

@stoaway, have you found any treatment that helps with the pain?

John

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Hi @johnbishop unfortunately no. I have seen so many different doctors for both my Myasthenia Gravis and the Arachnoiditis and the answer I receive from everyone is that there is no cure for either one only pain management with pain meds. To be honest I am truly tired of taking pain meds they help a little but then the body creates a tolerance to the meds and it becomes a roller coaster ride. I live in pain every day and I feel that there is no relief in sight. I am willing to go or travel anywhere where there is a doctor that can help me. I live in Miami but have been unable to find someone that can treat both disprders which is hard to believe. Do you have any recommendations?
Thank you, Mayra

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@stoaway

Hi @johnbishop unfortunately no. I have seen so many different doctors for both my Myasthenia Gravis and the Arachnoiditis and the answer I receive from everyone is that there is no cure for either one only pain management with pain meds. To be honest I am truly tired of taking pain meds they help a little but then the body creates a tolerance to the meds and it becomes a roller coaster ride. I live in pain every day and I feel that there is no relief in sight. I am willing to go or travel anywhere where there is a doctor that can help me. I live in Miami but have been unable to find someone that can treat both disprders which is hard to believe. Do you have any recommendations?
Thank you, Mayra

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Hi Mayra @stoaway, Mayo Clinic Pain Management Program may be something to look into to see if it will help. I have no medical training or background but I've heard others mention that it has been helpful. I did see that they have a handbook in PDF format that provides information about the program. Here is the link:
https://www.mayoclinic.org/documents/mc1459-02-pdf/doc-20078829

Mayo Clinic Jacksonville Campus does have a Pain Rehabilitation Center that may be helpful:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center

John

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@bfsecurityguy

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.

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I’m so sorry for your condition and pain. While researching spinal cord stimulators I read that they are used to treat the pain for Arachnoiditis. Here’s the website https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Spinal-Cord-Stimulation I hope this will be helpful to you.

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@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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Marilyn, Have you found a doctors? I am in need of one. If you have any resources please share them with me.
I do hope you are better.
Judy Falkoff
Conway, Ar.

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