tnich468 can you post a bit more about yourself i.e. When did the symptoms start? Where they after trauma? Etc. Try to be as detailed as possible and I will do my best to give my educated, non-professional opinion
Well I got diagnosed with eds back in 1990. Everything seemed ok until I hit puberty then my knees started hurting a LOT! Turns out that I started growing in the top 98%. Nothing major though until I turned 30, except hyper extension in muy joints, and my head started producing this electrical sensation in my body that shot all the way down my body, and my whole left side is numb most of the time. They have ran many many tests trying to rule out things like ms, Parkinson's, etc... There is grey matter lesions on the MRI scans, but all ms tests show negative. They thought maybe CADASIL ( very long acronym for something, but turns out no.
Get a second reading on the MRI, by a different doc. ARA is rarely dx , . Look up info from a Dr Tennant. His protacol for daily life has helped me with the electricity in my spine. Just look up his info .
Well I did look at some of the MRI images for the ARA thing and my spine / spinal column looks nothing like that, my images note only some arthritis, and compression in the disks (yes im learning how to read MRI's... but honestly the doctors say that the only REAL thing that looks wrong is a bunch of white lesions on my brain, and they haven't changed much since 2008. i would post a picture from the cd's I have of my MRI's but I don't think for hippa they allow that
I've been dealing with the same situation-especially since MS runs in my fam-however it only took a YEAR to find the greatest team of Drs-rheumatologist and my pain management Dr all new of course re-evaluate every symptom listened to me-performed all NEW tests and figured out it is my spinal cord and my cervical spondylitis sitch with all sorts of disc displacement plus firbyomyalgia so it literally was identical to MS symptoms and finally figured out what was happening-i wish you the best of luck and all I can do is identify with what you're going through but do NOT stop until you find a team of Doctors you LIKE get second third and fourth opinions if you need!! #KOTF #keeperOfTheFaith
Thanks for the comments! One last question I think... Does anyone have any ideas for NON opioid pain meds? I am on Hydro-codone 7.5 / 325 right now, and it knocks me out usually. It seems to help with the pain, but I would really like to come off of it, even if it means taking something else....I have tried Gabapenten 800 4x per day, Cymbalta (dosing I cant remember on cymbalta but I think about 120 mg daily). I am on Lyrica 250 mg per day, for my neurological pain and that seems to work pretty good usually. For my joints comming out, not so much.... Any thoughts would be greatly appreciated! Thanks again!
@tnich468 there is no HIPPA violation. You CAN do anything you wish with YOUR OWN medical records. It is your info. HIPPA is to protect individuals from anyone (besides themselves) having their personal information leaked out, intentionally or not. HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. This is the list of possible fines for knowingly and unknowingly releasing records. The fine for a first time infringement by someone who did not know they violated HIPAA could be as low as $100 or as high as $50,000. The fine for a violation due to willful neglect, but corrected within the required time period, is a minimum of $10,000 per violation with a maximum of $50,000. The fine when the willful neglect violation is not corrected increases from $10,000 to $50,000.