Scared and Confused Followup and Question about CIPD testing

I started a thread a while ago but things have changed (or not) since then. I've had weak muscles for about two months. Every week I seem to get a bit weaker. My right leg is a lot weaker though I can still get around fine. It just feels very wimpy and does not support me as it once did. It sort of throbs and I have to stretch it whenever I can. I fight for a subway seat as never before lol. Some minor twitching and cramping all over. Some tremors but I've had one in my left arm for years anyway. Been to a neuro and an ENT doc.

I went to a neuro last month (one month after the onset of symptoms). She did the emg test and the nerve test (the one with the sensors where they give you a jolt) but only in the weaker area of the initial onset (left arm and leg). She also gave me a physical. She said no ALS. She had an MRI done, just regular not the contrast one, and it came back neg for MS. The ENT did some autoimmune tests and they came back neg for all. My PCP did sedementation tests and CPK and all normal but was a month ago. I am still waiting for the tests results from Athena labs (talk about a monopoly and extortion). I believe the neuro had me tested for MG. I asked her receptionist to ask her about CIPD but no response. So I wait and get more worried as my body slowly gets weaker, especially my right leg. This could take another three weeks with Athena. I WILL go to another neuro. My cat's vet has MS and she told me to be proactive and not just wait around to the neuro - that I needed at least two opinions. Anyway that's it.

If anyone (Laurel are you there?) has any info on the kinds of tests involved with CIPD (especially what types and what they are called/codes) I would be most appreciative. I want to get to the bottom of this before I wind up in a wheelchair which would not be good for a five-flight walkup.

Hi Tim,
I am sorry that things have been so long and drawn out for you. The Athena tests that my husband had done were called a sensory motor panel. Those tests were negative on him. Husband had a lumbar puncture on his first neuromuscular disorder clinic visit which showed a slightly elevated protein. He had EMG and nerve conduction tests done on all four limbs. The first twitting neurologist did one limb only. The nerve conduction tests did show that all four limbs had demyelination happening even though he presented with only right arm and right leg symptoms i.e. atrophy of right hand and forearm and shortly after he had the testing he developed foot drop in the right foot. My husband's bloodwork and MRI's were all normal. She diagnosed him based on the EMG, nerve conductions, lumbar puncture, and her neuro exam of him. She did not give the diagnosis firmly until he was treated with IVIG. She wanted to assess whether he responded to it or not, and he did have good response. It sure seems too long for your Athena results. I think once we got the billing issues settled my husband had the results within one week.

I think you need to be seen at neuromuscular disease clinic versus going to just a regular neurologist. We went that route and wasted several years of hubby being misdiagnosed. And yes, a second opinion is a must. Get cracking Tim and don't wait around. Best of luck and keep us informed. And INSIST on copies of everything she has done thus far.
Laurel

Laurel thank you so much. I will follow your advice.