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Arachnoiditis: Trying to find a specialist
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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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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1 ReactionSharing IS Caring. Dr Ron Rubenzer. Your well-being is my commitment
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1 ReactionHello @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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1 ReactionAnyone familiar with Arachnoiditis?
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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1 ReactionI 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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1 ReactionHello @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/
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
Hope this helps.
John
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 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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1 ReactionHe 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.