Should I push my neurologist for further testing?

    • January 20, 2017 at 7:07 am

      I hope I can get some advice here because I’m not sure if I should be asking my neurologist to do more than she is doing. I started with numbness and tingling in my feet on December 27. Over the next few days it progressed up my legs to my waist. I decided it is time to contact a neurologist, since this happened to me about 14 years ago. That first episode peaked at about 4 weeks, with the numbness and tingling feeling mostly on my skin. It gradually subsided after 4 – 5 months, and the neuro decided after inconclusive MRIs that a virus may have caused it. For this current episode, the neurologist ordered a cervical MRI which showed nothing, and is now sending me for a brain MRI. She also ordered bloodwork: B12 folate and lyme titer. She also wrote and crossed out a test for syphilis, not sure why? Still waiting on results for that. After she saw me, the numbness and tingling traveled above my waist. It runs up my back, the back of my head, a band around my face at eye level, down my arms, sometimes my fingers, plus a really uncomfortable band around my midsection. No pain, just numbness and tingling, feelings of hot or cold mostly in the legs and feet, some vibrations in the legs, and at times I feel weakness in the arms and/or legs. I can walk fine although my gait can be odd when I’m more numb, and my reflexes were ok at my visit. I never know how I will feel day to day. If I over exert myself I feel worse the next day. Sometimes I wake up in the middle of the night because the tingling gets worse. Sometimes it gets better when I move around, sometimes it gets worse in certain positions. There is just no rhyme or reason, and sometimes it’s really scary. I’ve read posts on the forums and it doesn’t seem nearly as bad as what many of you have experienced but can there be milder cases of CIDP or GBS? I’m pretty sure this MRI is going to show nothing just like 14 years ago. If it has any bearing, I did have a really bad cold the week before this hit, followed by severe exhaustion from a crazy family circumstances, so I was pretty run down right before this happened. I appreciate any input.


    • GH
      January 20, 2017 at 10:08 am

      I do not support the idea of “pushing” your neurologist to do anything. Discuss your case with her and if you are concerned about the possibility of CIDP, just ask her. She should tell you whether that’s a possibility.

      Diagnosis of neuropathy is difficult. Your neurologist isn’t necessarily doing anything wrong, but if you feel the progress in diagnosing the problem is not what it should be, you can get a second opinion.

      • January 20, 2017 at 12:38 pm

        Hi GH, thanks for your input. Push was a poor choice of words on my part, sorry. I don’t want to imply that I think she’s doing anything wrong. I’m just thinking ahead to the possibility that my next MRI comes back clear and the blood work doesn’t show anything. The first time this happened the only tests run were the two MRIs, and I was told a virus probably made it’s way into my spine. I guess that could be the case again, I don’t know. I know my symptoms are so much milder than most who have posted on here, so I’m not sure if I’m way off base about asking my neurologist about it. I’m generally a calm person, but the anxiety I’m feeling from this is almost as bad as the actual symptoms, so maybe that is making me look for things that aren’t there. Anyway, thanks for reading!

    • GH
      January 20, 2017 at 12:49 pm

      There are mild cases of GBS, but it is a mistake to self-diagnose. Just ask your neurologist what she thinks. It is best to discuss any aspect of your case which is bothering you.