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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: 4 hours ago | Replies (405)
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@dkhouri

Please help!! I have been diagnosed with Arachnoiditis, extremely rare, intractable pain and neurologic sensation disorder. back and lower limbs-- burning, electrical shocks, vibrations, twitching, crawling, sharp stinging pain. I need help!!! No doctor so far can even remotely help me. I have been searching for someone for over a year. There is no cure but there must be some help? I live in MA, if you can call this living. Does anyone know of any doctor who can help me!!? All advice welcome!

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Replies to "Please help!! I have been diagnosed with Arachnoiditis, extremely rare, intractable pain and neurologic sensation disorder...."
Colleen Young, Connect Director | @colleenyoung | Oct 15, 2020

Hi @dkhouri, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing and active discussion about arachnoiditis. I did this so you can connect with other members like @arannek72 @donfeld @dubis @carolinapearl53 @kimspr3 @jelizabeth and more.

I see you are looking for a specialists in Massachusetts and that you have also posted to this discussion

Arachnoiditis: Trying to find a specialist
— https://connect.mayoclinic.org/discussion/i-am-looking-for-a-doctor-in-nc-that-treats-patients-arachnoiditis/

Have you looked into finding a specialist at MGH? Or considered traveling to Mayo Clinic?

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wisco50 | @wisco50 | Oct 15, 2020

I am so sorry for you. I knew someone hospitalized with it, in ICU, etc. Still has pain now. Surely someone in Boston must be able to help? So many great medical facilities there! Best of luck!

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Hank | @jesfactsmon | Oct 16, 2020

@dkhouri
Hi. I am very sorry to hear the desperation in your voice. Yor condition of Arachnoiditis sounds terrible. Interestingly I was just reading about pain pumps (another person on Connect is considering having one put in) and I read that Arachnoiditis is one condition that pain pumps work well for. In case it interests you, here is the website I was reading:
https://paintheory.co/chronic-pain/intrathecal-pain-pumps-for-chronic-pain/
You say you can not find any doctor to help you. What type of doctors have you seen so far? What did they say? Obviously you need to find someone in the right speciality who is willing to treat you. If it is truly incurable, probably a pain management doctor? What have you taken so far for your pain?

I also see that medical marijuana can be helpful for your sufferers of your illness, which is legal in MA I believe. Hope you find the help you need. Best, Hank

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