I've been seeking a diagnosis for 8 weeks while my symptoms are progressing. My main symptom is worsening weakness in the legs, arms, and hands; the remaining list is below. It started as paresthesia-like symptoms in the beginning weeks that moved up my limbs.

I've had 2 neurologists suggest another opinion, given no diagnosis, and am now going to the Cleveland clinic's neuromuscular group next week/ w my records.

Neurologist #2 stated that my physical exam/symptoms and progression presented like CIDP, but since the initial EMG (prior neurologist) was in normal limits, there was no need for a spinal tap or other tests (biopsy) to explore. She also said that even if the EMG was suspicious, it was too late for a spinal tap to confirm? She offered to treat my symptoms with Neurontin.

Can anyone confirm that a normal EMG omits the possibility of CIPD?

I've had 2 MDs say there was a good chance this was viral related.

I've also had a normal EEG, SEP (more recent), Brain MRI and most of my blood work has been normal, with the exception of higher sedimentation rates taken 5 weeks apart.

Presentation:
My symptoms started within 3 weeks of a bad virus and 1.5 weeks of a first time flu shot. The paresthesia-like symptoms (tingling) started in my finger tips. Then, to my toes and it moved around, but each week, it was also showing up further into my limbs. While this progressed, my face twitched at times, had hot flashes in different areas (feet and face especially) and then some body sweating. When I started to get shaky in my limbs, the constant weakness became the primary issue and some of the prior "transient" symptoms subsided. Chest tightness and arm pain came at week 6 (EKG, Chest Xray fine, but they want me to do a stress test) .The current list at week 8 is below.

Current Symptoms:
Very wobbly- lose balance/coordination- can’t manage a heal to toe (look intoxicated)
Legs feel like jello- still progressing this week
Sometimes my knees feel locked
Arms weak
Drop items: eg when brushing hair/ issue with grip
Can’t maneuver objects (open bottles, close buttons, zip pants, etc.)
Hard to lift body: up from floor, onto bed
Voice gets raspy at times or I struggle on some pronunciations
Cold hands, feet
Hands can be cold but also sweating & swollen/red with somewhat stiff fingers
In warm water, I get inflamed- frost bitten itchy feeling, red skin
Motion sickness
Metallic taste on lips & with water
Numb lips and tongue
Occasional mild pain
Exertion

Thank you in advance for any input

Did your doctor say WHY it would be too late to do a spinal tap? I had both a spinal tap and a sural nerve biopsy done at the Rochester Mayo over two years into my symptoms---I didn't think there was a cut off point to when either could be done, I would question it if you really feel a spinal tap would benefit you.

Did you get any antibiotics or other treatment prior to symptoms?

Hello: I was told today, it is likely CIDP. Tomorrow's spinal tap should confirm. The original EMG wasn't believed to be normal or ran correctly. I was tired of working with neurologists who didn't know where to go with me. I went to Cleveland Clinic. They ran the second emg & other bloodwork.

I had no antibiotics prior to the onset.

dac

great news in terms of finally getting a dx

hope your neuro gets you started on IVIg asap as it is the tx of 1st choice for cidp...it worked for me

I can confirm that it does not rule out the possibility of CIPD.