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.

@marilynmeadors

I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I’ve read that it is difficult and it takes special tests.

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Welcome to Connect @marilynmeadors
Here is a link to the American Medical Association’s doctor finder https://apps.ama-assn.org/doctorfinder/home.jsp. You can enter your zip code and find a physician or specialist in your area.

Have you considered traveling to one of our Mayo locations?

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@bfsecurityguy

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.

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@bfsecurityguy, I’m just wondering if you’ve found a Dr. In your area to treat you. I believe I may have arachnoiditis also, and need someone who can treat this.

Liked by kimkjc2, annmaria

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Welcome to Connect @msaliceinpain
Have you seen this discussion thread about arachnoiditis in the Brain & Nervous System group https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/ Like you @ledgerwp @asw417@Tbato622 were looking for a locally based doctor who specializes in Arachnoiditis. @d_corley43 strongly recommends her doctor in California. You may wish to connect with them.

You may also be interested in joining this thread about neuropathy https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/
Would you be willing to travel out of state?

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My daughter has a rare diseare also name Neuro Myelitis Optica NMO for your
limbs and nervous try cod liver aka fish oil i use the fish oil supplement
with a multiple vitman. My daughter was parylze off and on for a year due
PTS aka painful tonic spasms. This may not be an instant relief but with
belief in God and Prayer she is walkiwng running jumping ‘

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@colleenyoung

Welcome to Connect @msaliceinpain
Have you seen this discussion thread about arachnoiditis in the Brain & Nervous System group https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/ Like you @ledgerwp @asw417@Tbato622 were looking for a locally based doctor who specializes in Arachnoiditis. @d_corley43 strongly recommends her doctor in California. You may wish to connect with them.

You may also be interested in joining this thread about neuropathy https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/
Would you be willing to travel out of state?

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Yes we would be open to traveling out of state.

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@zerootonna1

My daughter has a rare diseare also name Neuro Myelitis Optica NMO for your
limbs and nervous try cod liver aka fish oil i use the fish oil supplement
with a multiple vitman. My daughter was parylze off and on for a year due
PTS aka painful tonic spasms. This may not be an instant relief but with
belief in God and Prayer she is walkiwng running jumping ‘

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Thank u ! My husband says we can easily pick those up. Can’t hurt to try

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@colleenyoung

Welcome to Connect @msaliceinpain
Have you seen this discussion thread about arachnoiditis in the Brain & Nervous System group https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/ Like you @ledgerwp @asw417@Tbato622 were looking for a locally based doctor who specializes in Arachnoiditis. @d_corley43 strongly recommends her doctor in California. You may wish to connect with them.

You may also be interested in joining this thread about neuropathy https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/
Would you be willing to travel out of state?

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Should you wish to get a second opinion at Mayo Clinic, please contact the number on this page or fill out the online request form: http://mayocl.in/1mtmR63

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Msaliceinpain so sorry this happened to you, you most definitely sound like you have Arachnoiditis and possibility a nipped nerve because it sounds so severe so fast. You need to get a Neurologist or Neurosurgeon to do that MRI on lumber with and without contrast so they can see and read it. My MRI’s since my spinal surgery in 4/2015 all say Arachnoiditis can not be ruled out, will my highly respected Neurosurgeon put it on paper as a diagnose? Guess not, I also from surgery now have Cauda Equina. I am in pain everyday with allll types of new and horrible symptoms constantly popping up. The pain meds he gives me are a joke, I need to find a pain management Doctor that understands this disease and how debilitating it is and I just don’t know, I’m so afraid they will only want to give me injections and I say h@ll no to that since they are one of the top causes of this disease. I so feel for you this takes your quality of life away and brings you to lows you never thought possible. I am on a Facebook support group called Arachnoiditis Everyday, it helps to at least learn more and not feel so alone. Everyone there talks about an expert on Arachnoiditis in California- Dr. Tennant I hope that’s the correct spelling, I don’t know if he’s taking new patients but I guess it’s worth a try looking him up. Best of luck to you.

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Hi, i am also from nc. I was just told that i could have arachnoitis. Scared to death…have you found a dr?

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This is a little late but this is most recent post I’ve seen… lol. I was just diagnosed with NMO this past February. I was looking for others who have it.

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I’m afraid I don’t know what it is. Can you please explain?

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@jenapower

I’m afraid I don’t know what it is. Can you please explain?

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I only know of a doctor I'm going to who is in Manchester TN. Like you I was very confused by the diagnoses and almost every doctor in my area had no clue what it was so therefore treated me like I was crazy. They kept telling me I was imagining things. It was very frustrating. It is a terrible disease and so painful doctors don't understand. I recently had spine stimulater implanted which is designed for nerve damage and currently working on getting it set right. Don't let anyone talk you into a pain pump because that is not for our disease. I hope this helps some. Good luck in finding someone to help you. 

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@jenapower

I’m afraid I don’t know what it is. Can you please explain?

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@jenapower I had to research what NMO stood for. There are so many acronyms for conditions I find it difficult to keep track of them!
In short,NMO –Neuromyelitis optica — is a disorder which involves the eyes (optic) and the spinal cord (myelitis). Here is a link for the full review. http://mayocl.in/2qwCDRy

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@jenapower

I’m afraid I don’t know what it is. Can you please explain?

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Thank you, I appreciate that

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@bfsecurityguy

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.

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Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

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