Cauda Equina syndrome/CIPD

[yorkieville]

Quix asked me to post my dx, as she has suggested the possibility of CIPD, to others.

Christmas, of 1997, I contracted a serious, un-dx'd virus. Literally, in bed for 6 weeks, fevers, unable to swallow anything but tea w. honey, lost weight. By spring of '98, my joints began to ache so much it was hard to walk. Went the round of doctors, 7 over a 5 year period, finally dx'd hypothyroid in 10/02.

March of '04, my legs began to burn, sometimes like a mild sunburn, other times like a blowtorch was aimed at them. D.O. never was overly concerned.

6/05, minor car accident, rear ended, bulging discs in neck flared, for a few months.

11/05, my low back began to ache. By Christmas all I could do was lay on the couch. Bowel problems began; constipation.

Spring of '06, I went to 2 months of PT to strengthen my muscles. No pain relief.

06/06, I had a total abdominal hysterectomy, bilateral salpingo oophorectomy. Gyne felt fibroids were causing my low back pain & constipation.

10/06, I had an A & P repair. (Small bowel & rectal prolapse.)

12/06 nerves in my  spine began to sting. D.O. sent me to a Pain Management Clinic where I had 3 nerve blockes and a radiofrequency ablation; still no pain relief.

Over this past past spring, I lost all bowel function. Proctography showed constipation as functional, not structural.

Since September, I have been going through neurological evaluations; ruled out things like SLE, Diabetes, Lyme. Neuro here in Valparaiso felt it was MS, based on my symptoms, and results of Brain MRI & spinal tap. (1 white matter lesion, 2 OG bands) but he wanted a 2nd opinion, so he sent me to Cleveland Clinic where I was evaluated by a wonderful Neuro, Dr. K. I had a deep nerve/muscle EMG. Results showed problem with nerves in my spine.

Received her report, dx of Cauda Equina Syndrome as a result of CIPD.

I had IV Infusions of 500 ml Solumedrol once a day, for 3 days, last weekend, then began oral Prednizone this past Monday.

So far, abslolutely no pain relief, no improvement in bowel function.

I have gait/balance issues. The low back pain has literally stopped, what once once, my very active life.

I hope this helps someone.

[yorkieville]

Oh, I empathize with you on the spine stinging!

Dr. K's report reads "Symptoms & findings could be due to a cauda equina syndrome from a demyelinating neuropathy such as CIPD. This would also explain the elevated protein and presence of oligogoclonal bands in the CSF".

Hmmm...actually, I am not really 'officially dx'd", am I? It says "could be". I misread the report the first time around.

I will be touching base with Dr. on the phone next week, I will be glad to hare whatever I learn.

I hope it will aide you in your researching cauda equina.

Thanks, Kristin, I am praying for you, too.
Sheila

[floridamom2]

Thanks for posting your dx's so far.  I too have the sensation of my spine being on fire when I have a exacerbation of my Sx's.  I am undiagnosed and had been researching the Cauda Equina Syndrome this weekend actually.

I do not understand how the lesion and the 2 OG bands fit into your dx - are they part of the CIPD?  I also don't see why the Solumedrol did not help with the inflamation yet or does it take more time to resolve since the Sx's have been so severe for so long.

Thanks for sharing your story so far and I hope that whatever your final dx is that you will eventually get some relief from the pain and some bowel function back!  I am praying for you!!
Kristin