Update on issues

The past few weeks have been really busy with appointments. First off my infusion last Friday went without issue, my IgG has risen to 855, so the IVIg is doing its thing.  My immunologist did increase my IVIg dosage to 50g, so hopefully that will help some. 

I saw my ENT 2 weeks ago. He believes the pain I am experiencing is related to nerve damage of my trigeminal nerve, which is located at your jaw and spread throughout your face and neck. With that being said, he prescribed Tegretol. Which is an anti-seizure medication used to suppress nerve damage. I’ve been on the medication for 2 weeks, and nothing has changed. The swallowing issues, lump in my throat, and the immense pain I feel right as I start eating. The new symptom I am experiencing is numbness. I was tested for mumps during my last infusion, that resulted negative, and I was also checked for MMR immunity, and it appears I am immune. Whether it’s innate, or I’m getting it from the IVIg, either way I’m covered. 

So I returned back to my ENT today. After a brief discussion, my surgery spot looks good. I explained all my concerns to him, and he agreed the next step is an MRI. The MRI is scheduled for 7:45am tomorrow morning. He believes it could be several issues:

TMJ Issue

Salivary Gland Issues

Nerve Damage

Inflammation 

So I will have that done tomorrow to narrow down what the problem is. He did bump my Tegretol dose to 600mg / day, so I will see how that goes as well. 

I am also in parallel chasing a possible actinomycosis infection with my GP and Infectious Disease team at UC Health. They have me scheduled for a face/neck CT on Friday. 

All for now. I’ll update this once I have results from the scans.