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.

@pianopain12

My heart truly goes out to you. Cauda equina syndrome is particularly terrifying and life-altering. I marvel at the strength of others and how they still rise above the suffering to seek help. I wish you safe journey and safe passage through this difficult time in your life.

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Thank you so much.

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@janie6696

So are we. He has not had an MRI to diagnosis it yet. We have to go where there is an open MRI because he is so claustrophobic, How do I follow Dr. Tennent? I have a daughter who is a health coach and she has suggested a couple essential oils to use topically. Haven't gotten them yet. I also email a friend who is an md and a naturopath. Not medical world but I am researching all possibilities.

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The essential oil did not work for him. He thought it might be helping slightly but it caused severe tension and agitation. We are investigating other ideas.

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@stoaway

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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Stoaway I seen your post I to have spinal Arachnoiditis and hereditary idiopathic neuropath I reached out because of talks about a spinal cord stimulator I had placed almost a year ago it helped some but not to the level that I would go get surgery as a matter of fact I’m having problems and having it removed my pedal insert has came loose that attaches inside and is causing havoc right now . This is a downfall to what could happen so now I have pain on top of the pain that I already had in the first place it’s been extreme pain and isn’t going away until they get me into surgery and seems there in no hurry as there is other surgeries in front of me I would think this is an emergency situation as this could cause even more damage to my spinal cord etc. Also when you have one of these depends on the leads you have you can’t get an MRI only x-rays with the one I have only head ct scan . I’m really worried because I can’t move around to much that it might mess me up even more

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