I am desperate to find a dr who treats arachnoiditis.

Posted by B foreman @bfsecurityguy, Jun 22, 2014

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.

@cj1010

I realize this has been posted a long time ago but trying to find out if you found relief?

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Hello @cj1010 — welcome to Connect. I'm tagging @caklady to see if she is able to share what has given her some relief.

John

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@cj1010

I realize this has been posted a long time ago but trying to find out if you found relief?

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Thank you so much!

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@cj1010

I realize this has been posted a long time ago but trying to find out if you found relief?

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Sharing IS Caring. Dr Ron Rubenzer. Your well-being is my commitment

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@meatmouth1

Anyone familiar with Arachnoiditis?

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Hello @meatmouth1, Welcome to Connect. I don't have arachnoiditis but there is an active discussion on Connect that you might want to post any questions you have so that you have more visibility:

Groups > Brain & Nervous System > I am desperate to find a dr who treats arachnoiditis.
https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I'm tagging our moderator Kanaaz @kanaazpereira to see if she is able to move your post to the above discussion so members with arachnoiditis will see it.
@meatmouth1 are you able to share a little more about your symptoms and any treatments you've found that help?

John

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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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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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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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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!

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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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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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