← Return to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

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@davehayward1

Neurologist #1 did an EMG/NCS test, told me I have SFSN and that nothing can be done. Neurologist #2 was much more proactive. She repeated the test, did extensive blood work, concluded I have CIDP for which no specific cause could be cited. As this is an autoimmune disease, 6 months of Ivig was prescribed; 3 consecutive/ 6 hour days each month for 6 months. I have completed 4 and will finish up in January. I will have an EMG/NCS test done upon completion in order to assess the results (compare them the "pre Ivig" results). To date, I can report no improvement in the sensations I experience. Based upon this, my Dr. does not expect to see improvement in my EMG/NCS scores. If this is the case, there are no further treatment recommendations. She is an excellent Neurologist. Fortunately, my symptoms are mild and they are progressing very slowly. While a steroid regimen could be of value, we both agree the side effects are not acceptable. We have discussed various meds she will prescribe to treat my symptoms and I will certainly continue to see her. If, indeed, she indicates no additional treatment options, I will keep plugging away. Fortunately, I live in an area with many hospitals, research-oriented facilities and excellent physicians. I have upgraded my Medicare coverage from an Advantage Plan to a Supplement, so, effective 1/1/22 there are many more options available to me. No sense quitting now.

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Replies to "Neurologist #1 did an EMG/NCS test, told me I have SFSN and that nothing can be..."

Good morning @davehayward1 . I’m so glad that you have found a doctor that you like and can trust! And a doctor that is willing to talk things over with you! Do you have any special tips for working with a doctor that you could share?