Originally Posted by thinkitdoit7

What I find interesting is that my PM doctor continues to prescribe injections, yearly myelograms etc in the areas where I have arachnoiditis and when I ask the doctor if these invasive procedures could aggravate the arachnoiditis I get blank looks and they say no.
My medical records read arachnoiditis from 1994 until about 2008. At some point my medical records were changed to " nerve clumping seen at......and the statement - "probable arachnoiditis".
I know you can't go from arachnoiditis to - well maybe it is, maybe it isn't. From what I have read arachnoiditis does not get better. I could be wrong though????
I strongly believe the doctors that perform the myelograms and the injections etc see this issue - arachnoiditis - and they know it could have been from something they did - so instead of saying - you have arachnoidits....they weenie out and dodge the bullet in fear of a lawsuit.
It seems like this one hospital in particular will not make a definitive arachnoiditis diagnosis when it was definite for so many years. And it appears to have gotten worse over the years based on the number of levels involved.
Why don't doctors want to discuss arachnoiditis with the patient? And why do they treat it like it is nothing?
Years ago I was in a different state and they took arachnoiditis seriously - I was treated like I had a good reason to be in pain because of arachnoiditis (keep in mind this is my perception of the situation of course).
Jacjie Stone - do whatever you have to do to get some relief.
I don't recommend illicit drugs, heck I have never gone that route but I can tell you I think about it everyday. And I know that when I get even a little relief from pain meds - my entire mental state changes back to hope. So I would sy do whatever you need to do - take care of yourself.
However, suicide is never the way to go - never.
We all get it - how incredibly difficult life is with irretractable, severe pain on a daily basis that does not get better. We believe you and all of us would do whatever we could to make your day better if we could - because we all know how a little relief goes a long way.
I can say this from experience. I know what is it like to be in that kind of pain for many many years - I have been in the state of mind where I didn't think I could live one more day in this kind of pain with no pain relief - yet this day I would make it through, then the next.
When I stopped thinking "I can't do this any longer" and started to live each moment, one at a time, not expecting so much from myself, forgetting what was behind me and not measuring my life based on everyone else's life - I was able to move forward.
I still live each day like that.....I know what it is like to reach the 10 out of 10 on the pain scale each day and not have relief. For me it involves uncontrolled screaming at any movement and even breathing causes that much pain, I vomit, I rock back and forth and in this 10 state of pain I cannot even cry. This is a daily occurence for me. Prayer and meditation are my lifelines.
After years of living like this - I know that my pain does not cause death - and I continue to learn new lessons each day in coping, compassion, love and kindness due to intense suffering.
Please take a step back and take control of your pain - do not let it take over your life. I know everyone here on this forum can help you to make it through. You are an incredible gift to all of us....thank you for bringing these issues to light.
Leesa - I would appreciate your take on arachnoiditis and doctor's reluctance to print out a definitive diagnosis.
Kelli