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.

@contributor

Hello, did the Healthy Wave Mat help your AA?

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Hello @contributor and welcome to Mayo Clinic Connect. I can see from your posts that you are interested in connecting with members @donfeld and @qball2019.

While we wait for them to respond, can you share more about your experience with Arachnoiditis?

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@contributor

Please tell me which brand of PEA you are taking? Thank you.

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Sorry for taking so long to reply. I just haven't been on my laptop very much. The PEA I take is Lake Avenue Nutrition PEA (Palmitoylethanolamide). They are on Amazon…. link below. These are 300mg and I take 2 of them twice per day. You can take up to 1200mg twice per day though per what I've read at http://www.arachnoiditishope.com and on the NIH website. Maybe start out at 600mg for a month and if you're still not getting enough relief go up from there. I say a month because you have to take it for awhile before notice some relief. Have you read the article on the NIH website? Here is the link for you https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5094513/ There's a bunch of scientific stuff but try to kind of skim through it. Read the article but pay most attention to the chart they have with the different doses for different kinds of pain. Please let me know if it helps you! Best of luck!

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Thank you so much for this information. I was hit by a car and AA has taken over my life and I am desperate to get better.

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@kimspr3

You mention 2 great doctors, may I add, The Burton Report, There is another informative web site, Arachnoiditis a quiet web of suffering. find them also on Facebook. Within their pages we can offer information on Aracachnoiditis, Adhesive Arachnoiditis which is worse, do's and dont's when thinking about therapy, aqua therapy, exercise or miracle cures. PT, Aqua Therapy, Stretching, I did it all because dr's thought it would help but it caused more pain. They were not to familiar with AA.I trusted them. I have A.A./BJA: British Journal of Anesthesia, Chronic Adhesive Arachnoiditis. Very informative. Joan you are so right when you say research.

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Yeah, even sitting here typing, treading standing, step-ouch, step-ouch. Thanks for Burton Report, will look at it. My best to ALL

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Symptomatic arachnoiditis and DDD, pain, numbness, stiffness but EMG is normal

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You should go to any Mayo Clinic in the country
It sounds like my story
No doctor in Houston ( best medical center in the country, Methodist Hospital) wanted to order an a MRI with contrast. That was the first test idoctors at the Mayo Clinic ordered. when I went . And they diagnosed my arachnoiditis.
Unfortunately it has gotten worse in my case and I get nerve blocks once in awhile or epidurals ( not great )
I also use a wheelchair
Good luck!

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I will ask a question again and my apologies if this was posted already
I would like to know if anyone with symptomatic arachnoiditis diagnosed through MRI has had a normal EMG
I know my pain, stiffness, numbness, tingling. My new neurologist it seems, is trying to convince me I should not have any of it with the normal EMG

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@kenyalama

I will ask a question again and my apologies if this was posted already
I would like to know if anyone with symptomatic arachnoiditis diagnosed through MRI has had a normal EMG
I know my pain, stiffness, numbness, tingling. My new neurologist it seems, is trying to convince me I should not have any of it with the normal EMG

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My EMG was not terrible, but not completely normal. After getting hit by a car while walking, I got a whiplash concussion with a brain bleed. I was not diagnosed with Arachnoiditis for over a year after an MRI of my spine. My symptoms are burning feet and leg pain, and electric shocks all over. I am taking gabapentin at 600 mg a day and it relieves the pain somewhat, but I can't handle any higher dose. Loopy and memory issues. I need to find a neurologist that knows something about this. Very frustrating.

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You could see Dr. Sandroni Mayo Clinic in Rochester or Dr. Hantoon same place
They came up with my diagnosis plus pelvic floor dysfunction
I also had a car accident that triggered Rheumatoid arthritis and relentless trigeminal neuralgia
I cannot take Neurontin, it causes amnesia on me
Good luck with all my heart

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@kenyalama

You could see Dr. Sandroni Mayo Clinic in Rochester or Dr. Hantoon same place
They came up with my diagnosis plus pelvic floor dysfunction
I also had a car accident that triggered Rheumatoid arthritis and relentless trigeminal neuralgia
I cannot take Neurontin, it causes amnesia on me
Good luck with all my heart

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Thank you for the recommendation! Best to you too!

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I had surgery at L3-4 level about 14 years ago and since then mri (s) have shown nerve root clumping or adhesion which has been diagnosed as adhesive arachnoiditis (AA). There is no greater pain. I know that there is no cure but I understand that it is treatable. Thanks to Dr. Forrest Tennant in West Covina, California I now have a greater understanding of AA by reading his monthly newsletters and noting his advice. My pain at the nerve clumping area is constant. In addition I have severe stenosis at 3 levels including my neck. I am now taking lyrica, cymbalta and of course opioids. Crying helps but is obviously not a long term solution. Where are the pain management doctors who specialize in treating Arachnoiditis? 10 out of 10 doctors who I meet have never heard of this rare disease. I am close to giving up.

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@peggyella

Correct spelling: PRAMIPEXOLE. I take 0.5 mg. at bedtime.

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Does tat help you? I surmise I have AA but I have no one to turn to…my surgeon doesn't want any part of it or doesn't know that much about it. I am on lyrica and dicofenac now. What side effects do you suffer from with the pramipexole? Who prescribes it?

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