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Old 02-07-2014, 07:24 AM #1
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Default Flaming arrow...twisted pelvis....big whine!

Some time ago I posted that I had shooting pain from my butt right down to my foot, and I got some great advice about it being sciatic pain, or pain from the piriformis muscle. Well... it went away for a while, and then came back as an almost nightly visitor over the last couple of weeks - and I am going crazy with it!!!

I have been seeing a physiotherapist, and apparently I have a twisted pelvis - which she is trying to put in place. Still the butt/leg burning and pain continues. So.....when I had my usual 6 month scan (Tysabri JC+) I asked my Neuro to request full brain, spinal cord, and full spine - which I had (took foreevverr to do ). The picture wasn't -perfect so he sent me for a sacro-lumbar spine CT as well. Waiting for results. Now wondering why I am having major diarrhea (sp) every day - lucky to get to the bathroom in time (don't know if this is worth mentioning??? - could be from meds????)

Neuro thinks I may have facet joint disease in my lumbar region - happy days!!!! Probably a result of 'not falling with style'.

My most recent scan shows a large lesion that is right in the middle of my spinal cord - almost right across it (barely any room around it at all) - it didn't light up with contrast, but is still relatively new.

Hurts every night, so hard to sleep - driving me crazy!!!! My work hours have tripled lately - and I am so not in the mood.

I eventually go to sleep with a hot pack on my butt, and take muscle relaxant meds - I don't like this, so I only take the drugs when I don't have to work the next morning. Once I get to sleep I usually stay that way - I just wish I had some answers.

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Old 02-07-2014, 09:07 AM #2
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OUCH!
That sounds really nasty Lynn.

I do know that sleeping on a heating pad, or leaving it on for extended periods of time can make things worse. Putting it on for 20 minutes at a time and then leaving it off for at least 30 minutes before re-applying it is the better way to go.

Leaving a heating pad on for longer than 20 minutes can cause the blood vessels in the area to stay dilated, which allows de-oxygenated blood to settle in the area. That can cause more inflammation and pain.
The alternative is to use a non-electric heat source that will naturally cool down after application. That way you can fall asleep without having to worry about taking it off.

The scan results of your spine might indicate that you have a partial transverse myelitis going on, so maybe ask your neuro about that. Partial TM can certainly cause the sort of pain and spasm that you have been having; but so can facet joint degeneration. There is a treatment for the facet joints where injections are put right into the joints and that helps a lot of folks. You might ask about that too.

I hope you get some answers and relief too. Having to work longer hours while you are going through this is a tough row to hoe. is there any chance of you getting some time off?

With love, Erika
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Old 02-07-2014, 10:29 AM #3
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I had a pain just like that five years ago, and it was Shingles. Probably not the case with you, but it was the exact pathway. It took two weeks to dx even though I was unable to walk on that leg when I went to the ER. The ER doctor thought I could walk if I tried. I tried, and fell into his arms. But a smarter doctor recognized it two weeks later in the same ER. I wonder why it was hard to see? All the first ER doc could see was a "hot red leg" but it didn't ring a bell--didn't I have a rash? I probably would have missed the rash if I'd been trying to look on the back of my leg.
Yesterday I had the same pain and I thought it might be a recurrence. I have a fever and cold, so I just lay there and didn't try to go to the doctor. Today, however, it is not anywhere near as bad so I guess it's not Shingles, unless Shingles comes back in a more minor way.
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Old 02-09-2014, 07:35 AM #4
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Thanks guys

Erika - my heating pad is one of those ones you put in the microwave and cools down after a while. I just couldn't possibly sleep without it.

My Neuro didn't seem too concerned about the lesion (easy for him to say!) - apparently, it was also on my last scan, but neither me or my husband remember him saying anything about it before (maybe his missed it - pretty obvious to miss).

I will just continue with Physio, and see what the doc says about my CT scan. Spinal cortisone shots have been mentioned - if I need them.

Just have to wait and see. I have had a couple of better nights since I posted - hoping for many more.
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Old 02-09-2014, 08:29 AM #5
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I'm glad that you are experiencing some improvement Lynn.
Those types of heating pads are excellent .

The PT should help to bring things around; and it does sound like your PT is on top of it. Her detecting the twist in the pelvis is an indication of that.
When there is a problem with the lower back/pelvis, be it pain, inflammation, joint degeneration, spasm or a combination of those, the compensations that occur in the mechanics can perpetuate more problems.

It is odd that your neuro didn't mention or pick up on the scan findings, so it is definitely worth bringing up. Sometimes new symptoms are simply considered to be a progression of an existing condition like MS, when in fact the new symptoms are caused by something else entirely and would benefit from specifically directed treatment of that cause.

Wishing you well and speedy relief from this .

With love, Erika
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Old 02-09-2014, 08:37 AM #6
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Ann, I hope that all the treatments eases your pain...you have enough to deal with, added that your extra hours must make you stressed a bit, which I know for me makes me tighten up.
In PT this last go-round, the therapist noticed my hip didn't move right and I compensated...her exercises have helped a lot. I fell many years ago and didn't go to the doctor, which probably damaged my SI joint, causing the gait problem.

The extra problem with this type of pain, for me at least, is that pain meds don't usually help. I seem to remember that gabapentin helped a bit, but not many people can tolerate it.

Anyway, prayers sent to you for relief
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Old 02-13-2014, 06:50 AM #7
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Heat pad working really well when I need it - results from CT came back, no disc involvement, but signs of facet joint degeneration. Will do all the PT exercises for pelvis twist, and see what happens.

Thank you to all for the support

xox
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