Arachnoiditis: Trying to find a specialist

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!

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

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.

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.

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

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?

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!

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.

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

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