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round &round they go, please help?

Started by mrs.57 on 04/09/2011 8:25pm

I came here out of desperation. I'm now 57, it took almost 2 decades to get diagnosed with psoriatic arthritis; my chronic pain, weakness, fatigue etc was chalked up to depression. I admit to depression but it IS secondary to living daily with debilitating pain. Even so, I put myself thru college, worked full tie 25 yrs and threw in the towel in 2010.
So here's my question...I see a rhuematologist, who diagnosied me first as having rhuematoid, then noticed the psoriasis and after 5 yrs we found Humira is the correct med. I took prednisone for 4 years at varying doses and currently trying to wean off at .5mg.
I am now taking meds to sleep/meds for fibromyalgia (neurologist test diagnosed this) Thmeds for psoriatic arhtritis/med for IBS and then in 2010 I woke up to find I had no ability to use my legs from waist down.
Reported this info to dr. she didnt seem impressed, said insurance wouldnt cover another mri at that time. after 7 days I gradually was able to walk but the pain in lower back never left and it radiated to left hip and now its in the groin. In fact I can actually press deeply into my thigh and locate the pain, pushing and kneading the area bringing out the pain, almmost is a relief-that may sound weird-it loses its vagueness and become a pain with place, definition.
So finally 2 MRI were done, the first showed nothing so I was sent for a 2nd. Let me preface the findings with a note that I am now 5'.5 (was 5'.7 in 2008) and weigh 282lbs. I try to walk every day, but when I do I need hours to recuperate. The fact is I live around my pain,, which is very limiting.

So here is some:
Significant loss of disc height and signal noted at T5/T6 T6/T7/ T7/T8 consistent w marked disc dessication and endplate degenerative type change.
Exophytic large right paracentrl disc extrusion compressing ventral aspect of the cord at T10/T11.

To my face Spine Dr. said, you are a large woman, it was very hard to get a reading.
then he showed me on the computer screen that my spine is compressed. A quarter sized circle became a pinhole.
No surgery, come back in 6 months for a recheck.

In the meantime, I am in excruciating pain and rhuematologist suggested an epidural. I am alone and have a pet, really isolated and do not want to have a procedure that will leave me bed bound in a hospital.

I read here many of you have had epidurals that have proved of little help. Has anyone been told they're too big to get a decent MRI reading???

Last question...I'm actually trying to wean off prednisone after 4 yrs..rhuematologist said cant stay on it forever! Each attempt to wean off means a backlash of agonizing symptoms, your input on how to handle would also be appreciated, maybe just bite the bullet.

Thank you to whomever has the time and interest to post.

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1 Response


Mrs 57
I am so sorry that you are going through all of this first off, secondly being alone is very hard when you are in chronic pain.
I don't have answers for all your questions but I do think you need to go to a university hospital that has a spinal team and get everything re-checked out and find out what they can do to help you.
A lot of times going from doctor to doctor who do not work together ends up getting all screwed up. Diagnosis's are made by one and the other believes that there is something else wrong. So a team of doctors who all work together may end up being better for you.
I would also tell you to contact your local social service department and tell them what is going on with you. They may be able to send someone over to assist you in getting your at home medical care. If your on SSI or SSD you may be able to call your local office for the aging and they can help you.
One question about the MRI before I go. Were either of the MRI tests done in a open MRI machine?
If not you may want to suggest to your doctor that they order an open one. A friend of mine who is a BBW had better luck with the open MRI because of her size.
Im really sorry that all of this is going on and I hope that you can fine the help you need.