I was diagnosed with CD just a few months ago but riding the rollercoaster since. I was on Pred and Pentassa and Kapidex but started to experience drop foot symptoms (numbing in legs, loss of control of feet, too painful to walk). GI took me off all meds to see if it got better but although some of the pain has lessened, the control issue and numbness remains. I had a back x-ray and they used the term Degenerative Disk Disease.
After the GI doc consulted with a Neurologist she put me back on Pred (starting at 20 and then tapering after a week). The thought was that there was some swelling in the spine that should be relieved with the Pred
I am going to the Neurologist and GI on Friday (separately). I am a little freaked with the drop foot thing and I really really really do not want anymore Pred. It makes me crazy and I can not sleep.
Has anyone experienced anything similar? Anyone have any thoughts or approaches? I am quite concerned but do not know how seriously to take this…
I have lost a fair amount of weight in the last little while also (more than 25lbs). I wonder if that has something to do with it. I will talk to the neurologist re never conduction study.
I have never had a back injury although I have strained mine a few times, but no more serious than many I would expect
I am not sure about Herniated disc or Osteoarthritis but if it sounds familiar to you, I guess this too could be the cause.
Thanks for the insight
I hope to know more tomorrow but realize that most likely it will be like the rest of the doc appointments and will be inconclusive.
I will let you know the results
This is my current status.
I went for my Neurologist appointment. He thinks the root cause is viral. He also said that many of his patients have CD and although these symptoms cannot be blamed directly on CD, that the compromised immune system of CD folks is most likely why this is happening. He said he has seen this mostly in CD folks feet and wrists.
He put me on Metanx, and I am going to have a conductive test then he expects to put me on more steroids. He does not expect this to be permanent and I should get 90% back within 6 months and more over the following 3 years. Two points on the meds. I looked at the generic for Metanx and it seemed from everything I could find that the generic does not contain the active ingredient that I am taking the med for, so from what I could read, this is one where the generic is not an option. Second point, I told him I am not going on Prednisone again. I just cannot stand it. He said he will come up with another option in consult with my GI and then we might add Low Dose Lithium (LDL) to offset the steroids. Can anyone give me insight into LDL?
After the Neurologist I went to the GI. She pushed on my gut (lower bowel) where my issues are. Guess what NO PAIN!!! Although the prednisone is kicking the heck out of me, and the SCD is a bit of a pain and the Pentassa is way too expensive…. I really really think I am making big progress. I now am experiencing very little daily pain and little to no D. YEA.
Thanks to all