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Re: looking for help.

Postby trebletree4u » Sun Oct 17, 2010 4:57 pm

guillian - barre was ruled out as soon as my csf showed no protein elevation.
the neurologist did perform some testduring his exam, and stated there was definite nerve damage. just couldn't and still can't identify it.
it's getting colder here in ohio. and the weather definitely changes the way i feel. i am not looking forward to the winter months. does anyone else have adverse changes in the cold?
last winter, jan. thru mar. were brutal. i'm considering movig to st. croix to stay out of the extreme cold. for those months.
when the temps hit the high nineties, i just felt sick. not as much pain. just didn't feel good at all.
i do get relief if i crack my sacro-illiac joint. at first the pain is awful. after five minutes, i start to feel better.
the colon issue is the hardest for me. when i do go, i get sick from over exertion. i've tried everything imaginable to relieve this, nothing works.
i'm going to see a neural spine specialist a week from tuesday.
i'm trying to get a high- field mri of my sacral spine. any other thoughts as to what else i should ask to be tested for?

thanks in advance
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Re: looking for help.

Postby calluna » Sun Oct 17, 2010 9:49 pm

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Last edited by calluna on Wed Nov 04, 2015 1:21 am, edited 1 time in total.
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Re: looking for help.

Postby HerMajesty » Sun Oct 17, 2010 10:46 pm

calluna, while I personally am quite religious and would seek Christian counselling if I felt I needed conselling, I really do think CBT is the best secular therapy mode out there. The Swish technique I have never heard of - will need to look that up.

Trebletree4u, I live in Las Vegas and advise if you plan to move for climate to reduce your pain, look not just for warmth but for dryness. There is a huge difference between dryness and humidity when it comes to these symptoms. Here in Vegas I wake up with mild soreness in my right hand, making it a little hard to open and close, and sometimes a little tingling / pins and needles in the left. I don't even think about it - by the time I take my pudendal meds and shower it is long gone. We went to Laguna Beach this summer, nice warm weather, but my hands hurt so bad for the entire 1st night, I could not sleep. Next day I bought a bottle of aleve for bedtime, which improved it some. But the humidity did make me much worse. We camped at Death Valley once, which is the lowest point in the nation (= highest barometric pressure), and also probably the dryest, and while we were there I felt like I was cured! Of course you don't want to move there, it's 120 degrees in the summer.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: looking for help.

Postby Violet M » Mon Oct 18, 2010 4:13 am

Trebletree it's unfortunate that you are still in limbo without a definite diagnosis and still feeling rotten. Your illness sounds like a bit of a mystery. Did your docs rule out transverse myelitis? http://www.ninds.nih.gov/disorders/tran ... elitis.htm
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: looking for help.

Postby trebletree4u » Mon Oct 18, 2010 7:43 pm

the first neurologist said it was transverse myelitis. after i had the first episode back in oct. of 09. where everything went haywire was in mar. of this year, i had another attack. that is why i was referred to the cleveland clinic to be evaluated for m.s.
it's rare to have two bouts of transverse myelitis. but it does occur.
i'll have to look into the disease futher and see if it can occur in the sacral region. it just doesnt make sense to have the pain shoot down the sciatic nerve and still have issues with colon, bladder and testicle.these are sacral 2,3 and 4 issues. all with pudendal attachment. all the pain feels as though its originating from the s-i joint.
ive been looking hard at piriformis syndrome. this muscle has interaction with both the sciatic and pudendal nerves. other issues im looking at are pelvic floor dysfunction or the possibility that my hips were knocked out of balance, also looking at sacro-iliac dysfunction. i did suffer an injury while deep sea fishing approx. four months prior to any symptoms showing. an 80 lb. fish i was reeling in charged the boat then made a quick turn to my left. it threw me hip first into the side of the boat. it knocked me down for 20 or 30 minutes. my wonderful brother landed the fish before he stopped to see if i was ok. what a great brother.
thanks for keeping my wheels turning. it gives me something to do besides sitting around suffering.
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Re: looking for help.

Postby Violet M » Mon Oct 18, 2010 10:41 pm

Yowie! That sounds like a nasty accident. It's odd that the symptoms did not show up for 4 months but it seems like with many PN patients sometimes there is a series of things that add up to the final illness so I think you are smart to be looking into the SI and piriformis possibilities. Given your history, you may also want to read some of the posts about acetabular labral tears.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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