Howdy,

It’s been a few weeks and between doctor’s offices and messed up labs and home
Infusion companies- I guess I’m getting closer to ivig…

In the meantime, I’ve seen an ENT as my neurologist recommended. Fortunately they ruled out Meniueres Disease. The ent sent me for a cdp test, which test balance between your vestibular, vision and somatasensory system.

The physical therapist that test me, told me that my vision and vestibular (inner ear system) were impaired and functioning below age level average. She explained that my brain, inner ear and vision do not always communicate properly and that causes my brain to have a momentary lose of body in space which is what is causing my “drop” attacks.

She couldn’t say what caused the deficits, but did say that autoimmune could be cause if it’s related the nerve damage.

She gave me a tip and I’ve been practicing it since Friday. She said for me to pick a fixed point when I’m walking to focus on, and that should help decrease the drop attacks. Oddly enough- it works. Yesterday and Today were the first days I haven’t fallen in months.

I’m very cautiously optimistic that with ivig and balance therapy, I might be able to walk normally again…

Hope everyone is staying well and safe.

Good evening,

An update from my last post. Two mris were ordered, thoracic and Cervical. The doctor called me today and said the mris did not show anything that stood out. Then she went on to say that some of my blood work was slightly abnormal which was in line with autoimmune/upper motor neuron neuropathy. They want to start me on IVIG to see if it helps.

Since this all started I’ve read a decent bit about IVIG, but was curious how long it could take before positive results could be seen? I’ve seen some post say it was immediate others say months- etc.

Still no confirmed diagnosis, but at least getting some treatment may help with the falling/dipping/tingling legs.

Thanks for all the support and encouragement. Hope everyone is staying safe and well out there.

Hey,

Thanks for the reply. I will have try and take note of my reactions in those situations.

My doctor updated my patient portal two days ago with a diagnosis of Myelopathy. I haven’t had a chance to talk with her yet, but I have a thoracic and cerival mri scheduled for next Friday.

After she gets those results, she wants to have a face to face to go over everything and I guess explain it all.

Did you/anyone else ever have another issue like myelopathy that was a symptom of Cidp?