So.. I’ve started using the soft cervical collar most nights when I sleep. My CSF leak has waned again, which is awesome!
Had my MRI done, and now I have a dx of cervical and lumbar osteoarthritis, with degenerating discs putting pressure on my nerves and spinal cord, to go along with my dx of Joint Hypermobility Syndrome. I begged the office for a referral to a physical therapist, because I’m thinking that being taught how to position my body “correctly” at all times and how to exercise correctly are going to be crucial aspects in sustaining a good quality of life. Being only 30 years old, and reading that osteoarthritis is considered “early-onset” when it affects someone under the age of 50, is daunting in and of itself.
Aside from the cervical collar, I use a sacroiliac cushion on my desk chair, and wear a sacroiliac belt to work. I haven’t had the follow-up with my rheumatologist yet, so I can’t say for certain, but I’m speculating that my hip joint is more affected by osteoarthritis than my lumbar spine, based solely on the fact that wearing just the sacroiliac belt relieves my sciatic nerve pain just as well as wearing the Saunder’s all-back support brace.
I haven’t located an opthamologist to have my eyes tested as a prerequisite for starting the plaquenil treatment yet. I’m still debating; working midnights and having a flare of bursitis in my left shoulder have taken their toll on my research time. I am, however, incredibly tired of taking anti-inflammatory meds and feeling little to no improvement.
I will be sure to ask about Diamox at my appointment on the 28th, and let you know how that pans out for me.
I’m trying to have patience with my rheumy, and keeping in mind that he has studied and retained information about thousands of different patients and medical conditions, while I’ve really only studied my own body and its symptoms for the past 25 years. In that light, though, Dr. Diana, I have to agree with you on the “patients are the best minds to figure this out” front. Especially when it’s a condition that can cause such a wide variety of symptoms from patient to patient; I think it’s important for every person who is affected by this condition to speak up and seek out a diagnosis and have their individual case recorded – if not for researchers to use immediately, then for future generations to study and learn from.