Share this:
msaliceinpain
@msaliceinpain

Posts: 3
Joined: May 22, 2016

I am looking for a doctor in NC that treats patients Arachnoiditis.

Posted by @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.

REPLY

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
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 ‘

@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?

Jump to this post

Yes we would be open to traveling out of state.

@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 ‘

Jump to this post

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

@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?

Jump to this post

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?

@jenapower

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

Jump to this post

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. 

@jenapower

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

Jump to this post

@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

@jenapower

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

Jump to this post

Thank you, I appreciate that

Please login or register to post a reply.