May 26, 2018 at 12:07 am
Hi there. I am new here and I have a question that will likely seem strange. I have been having many nerve issues since last April. It started when my right thigh and foot began going numb in places with extreme nerve pain. I have had two prior back surgeries on L5-S1 and L4-L5, in 2013 and 2015, respectively. I attributed the pain to my back. After 2 lumbar MRIs, it was determined I have failed back surgery syndrome with nerve impingement in both discs. I had an EMG in October that showed no peripheral neropathy, but bilateral L5 radiculopathy and meralgia paresthetica. I ended up with urinary retention and my arms were going numb at night so there was another MRI on my cervical and thoracic spine. It showed several tiny herniations, but nothing that should really produce any symptoms. Even the lumbar herniations were non-operable. My right foot pain continued to worsen and my primary care physician sent me to a podiatrist and ordered a new EMG. The podiatrist diagnosed me with either capsulitis or a neuroma, gave me some stretches to do along with wearing a gel sleeve that was supposed to absorb the impact normally distributed to the ball of my foot. In the meantime, I went for my 2nd EMG. It showed bilateral L5 radiculopathy again, but this time it indicates peripheral sensory demyelinative polyneuropathy. I went back to my pcp to go over the EMG. She basically said it is autoimmune and I need to see a neurologist. She kind of went back and forth and then said she thinks it is being caused by my back. It will take months to get in to a neurologist and in the meantime I am worried because the nerve pain continues to worsen at my hips, and in my right thigh and foot only. What is really crazy is that the EMG shows my left side to actually be worse than my right. I am so confused by all of this. I don’t understand how the EMG didn’t show any peripheral neuropathy in October, but now it shows this. I am hoping it is wrong, but I am terrified it isn’t because of how I feel. I know I need to stop googling things, but when I google peripheral sensory demyelinative polyneuropathy, the only things that come up are Guillan-Barre and CIPD. Can any of you please tell me if this is how your diagnosis started? Does this even seem right, or do I seem like I’m way off the beaten path. Thank you so much for your time. There really isn’t anyone else in my life who understands what I am going through.
May 27, 2018 at 1:47 pm
So, yes… Mine started similarly. A variety of mei’s and such…. Finally to have 1 neuro tell me it’s diabetic neuropathy…. Well, ok so my numbers were slightly high. So then another wave of pain hours me and this neuro tells me that it’s a reaction to my med.. I say no, I’ve had this before and he dismisses me. So 2 weeks later, I’m crying and talking with my wife, telling her (like I have told all the docs), that there is SOMETHING going on with my body… She says get a second opinion. So I did…. This neuro, (thank God for him) actually listens to my whole story, reads my entire list I made of my symptoms with a timeline, and agreed with me…. There is something else going on…. So after 2 days of testing, 1. I don’t have MS… 2. I DO have a brain! 😁 3. I have elevated protein in my CSF and other markers indicating I have CIDP… So will be starting IVig hopefully within a month, especially since the 6 week apart nerve conduction studies shows deterioration. So, I hope this helps you and your situation. Good luck in getting the answers you seek!
May 27, 2018 at 1:57 pm
Please review the linked brochure to understand CIDP symptoms, diagnosis, and treatment options. Hopefully the info will help guide you to a proper determination.
May 27, 2018 at 5:21 pm
GBS and CIDP are generally bilaterally symmetric.
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