Arachnoiditis: Trying to find a specialist

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?

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

Yes we would be open to traveling out of state.

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

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

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.

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

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.

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

I only know of a doctor I&apos;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&apos;t understand. I recently had spine stimulater implanted which is designed for nerve damage and currently working on getting it set right. Don&apos;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.