something demyelinating going on

    • Anonymous
      December 14, 2011 at 8:37 am

      I’ve been reading around on this forum for a while now and have finally decided to post! I am not diagnosed with CIDP but am wondering if it could be a possibility for me.
      At the beginning of this year I started getting migraines every day then my legs started to feel heavy and fall asleep a lot. On June 16th I had a lot of pain in my back, pelvic area and legs followed by extreme numbness affecting from below my waist downwards. I ended up in hospital and no doctors knew what it could be due to my clear MRI’s. I was told they ruled out GBS though I’m not sure how as I didn’t have a lumbar puncture at the time only blood tests and scans. Over the next couple of weeks the numbness started to leave and I felt almost normal apart from having sensations of hot and cold water running down my legs. This return to almost normality lasted for about 3 weeks then I started to decline again. I was told by one neurologist he thought I’d had an attack of transverse myelitis which he could tell by my developing of clonus in my left leg. I didn’t have clonus in my leg when this first started I feel that if it was TM this would not have developed months after the attack.
      The numbness and difficulty in walking seems to be progressing since around the start of September. I have since had a lumbar puncture with initial findings being normal and I still await results for oligoclonal bands. The only abnormailty that has been found is I have anticardiolipin antibodies in my blood so have been taking aspirin daily.
      I haven’t had a electro conductive study but I see a neurologist on Monday and am going to ask for one. I just don’t know what this could be but I also don’t feel comfortable waiting around whilst I feel like I’m getting worse. I might add I have never lost any reflexes but my reflexes are very brisk on occasion usually when my symptoms are bad. I don’t feel as though my symptoms began at my feet and worked its way upwards I think the numbness started in my butt cheeks then progressed :confused: I am really at a loss! Any input would be greatly appreciated I hope this post had made sense hard to put everything in that has been going on this year!

    • Anonymous
      December 14, 2011 at 9:30 am

      It makes sense to us; and I’m hoping it will make sense to your doctors.
      Welcome to the forum, though we are sorry you need to be here.

    • Anonymous
      December 14, 2011 at 7:58 pm

      Welcome Rainydays. Sure sounds like an EMG and nerve conduction studies are needed to rule out things and get a diagnosis. Your symptoms are so atypical and unfamiliar to me that I can’t give an educated guess at what is going on.
      Good luck.

    • December 14, 2011 at 11:26 pm

      Hi Rainydays! I am in diagnositic limbo myself- not a fun process at all!
      Did they perform your MRI’s of your low back as well? did they use contrast? Good luck! I hope you get to feeling better soon and find some answers!