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Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

@jelizabeth I am so sorry to hear your story and hear about your continued pain! I just continue to see my general practitioner. With the opioid crack down he is so limited now though and my pain seems to be getting worse (it seems) Every day.
Now on top of it I have been diagnosed with shingles. I never got the rash. The dr said we caught it early enough so I have been on the antibiotics but the pain is still there. I pray I don’t get the postherpetic neuralgia where the shingles nerve pain never goes away but with my luck…
Currently I am also having Major swelling in my joints which is Very painful. I had bloodwork done yesterday so I had them add esr and crp levels to see the inflammation going on. I have been bedridden for 8 weeks now. I try to do light stretches/movement but then I get muscle spasms. I am just so totally over it!!

Thu, Jan 23 10:49am · Arachnoiditis: Trying to find a specialist in Spine Health

I live in Central Florida and have been looking for a Dr/neuroradiologist as well. I actually posted for a recommendation yesterday on one of the Arachnoiditis fb groups that I am in. I saw a pain doctor in March 2015 who, very matter of factly, scheduled a series of spinal epidural injections for me without any prior testing done. After the first injection I had numbness that lasted longer than it should have but was assured that happens sometimes. Before the second injection I was asked my pain level which was a 6/7. As soon as I woke from anesthesia I said something was very wrong. My pain was a 9/10 and I could tell there was something different. When it didn’t get better after steroids I insisted on an mri which was done at the local imaging center. The results listed “no Arachnoiditis found” which I found odd since I had never heard that word before. I had posted my experience on fb and a friend said I probably did have Arc from the injection and the imaging center was probably owned by the same doctors as the pain center. She suggested I send my disc to Dr Aldrete in North Florida. I sent my disc to him as well as a neurologist, Dr Sauborm, in California. Both doctors responded with detailed reports showing specific images with evidence of the early stages of Adhesive Arachnoiditis. The mri was just weeks after the second injection. I took both reports to my primary doctor who was friends with the local radiologist. He called him while I was there and went over the reports explaining everything the specialists found. The local radiologist refused to change his report. Shortly after I received a certified letter from the pain doctor saying that I was no longer welcome as a patient. That was almost 5 years ago now and my health has been steadily declining as my pain levels have been increasing. I am still fighting for disability because of the local radiologist’s reports of no Arachnoiditis and the fact that I “paid for outside reviews”. I am now fighting at the federal, and final level for disability. I have learned a lot in the past few years about the disorder, especially that I need to have a follow up mri to see how far the disorder has advanced but if I go to another doctor or another radiologist that is not familiar with Arc and does not know how to diagnose it and ends up misreading a new mri, no matter how evident the Arachnoiditis may be, he/she can destroy my chance of getting effective treatment in the future. I continually hear that I don’t qualify for this or can’t receive that because “I do not have a definitive diagnosis that would warrant it”. I use aids in my everyday use (cane, walker and wheelchair) my husband has to help me shower/dress and so many days I can’t get out of bed at all. Finding the right doctor with the knowledge of diagnosing and treating is such an important step. One I have been praying for and working so hard to find for almost 5 years now so if anyone knows of one please share!