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Arachnoiditis: Trying to find a specialist
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.
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Why don’t you go to a Mayo Clinic near you isn’t that what this site is about they can help you I’m sure
Arachnoiditishope.com
Dr Forrest Tennant
The information at his site is critical information for you to learn.
They can refer some east coast doctors perhaps.
I went to several doctors trying to find help for my back and nobody could tell me what was wrong. Finally I saw a doctor in 2013 at UAB in Birmingham Al. and he told me I have Arachnoiditis but there were no specialist because there was no way to fix the problem. (He is now deceased.) I had an MRI in 2020 and the Radioligist did not even put it in his report but when I went to my Orthopedic doctor he showed me 5 levels of scar tissue in my spine that were inflamed and he said it was Arachnoiditis. My pain doctor does not believe I have it because the Radiologist did not put it in the report so I told him to look at Orthopedic Doctors notes to him and he would see it was there. Radiologist do not recognize this because it is rare. Look up Dr. Forrest Tennant in California. He is the best place to start. I have had this about 15 years and I will be in a wheelchair soon because nobody has found a way to fix this. I am praying for a miracle from God. He is my only hope in all things.
Have been in pain for 6 yrs in hip and lumbar region. Have approximately 8 shots in back as well as an ablation. Surgeon, after looking at 3 MRIs says I need a fusion. Sometimes it’s so bad I have to use a walker. Have fallen twice now so forced to go to a Fall Clinic. 2 radiologists have said I have arachnoiditis. Help!!
<p>Looking for diagnosis. Does anyone know of a doctor in the Des Moines, Iowa area who is familiar with Arachnoiditis?<br />All my symptoms suggest Arachnoiditis, but it appears that most doctors and neurosurgeons that I have gone to are not familiar.<br />I had a recent MRI. I could probably mail the images if needed. Not sure if any blood work would help detect it.<br />Thanks for your time.</p>
I would contact the neurology dept at Mayo Clinic in Rochester, Minn. Excellent team of spine care physicians and technicians.
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3 ReactionsI'm looking for a doctor near or around Iowa who can determine if someone has arachnoiditis. Your help is appreciated if you can provide a name.
Thanks,
Shawn
Do you know of any specific doctors who would be familiar with arachnoiditis?
Dr Jeremy Fogelson
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2 ReactionsDoes anyone with Arachnoiditis suffer with extreme fatigue, sleeping 9 or more hours a day (more if possible) that coincides with a fever when the severe spinal pain returns?