My journey to MN starts today

I am getting on a plane today, after all these months of waiting my turn, to see Dr. Afrin at UM.  My husband asked if I was excited.  I said that doesn't seem like the right feeling.  Not sure what I feel really.  I just know I want answers & a better treatment plan.  Right now my diagnosis is autoimmune urticaria.  The doctor felt that as long as I don't have a rash then I am being medicated properly.

Reading Dr. Afrin's book I feel that more of my symptoms could be controlled better with different medications.  I believe more symptoms can be attributed to MCAD/MCAS.

Things like
-hair loss
-stomach pain, nausea
-headaches
-tinnitus
-nose pain/burning
-abnormal blood work that indicate viral infections, but they subside the same day or next day

My flight has been delayed, luckily I found that out before going to the airport.

I hope this appointment is productive & that I am not wasting his time.  I hope he can suggest something new & not just tell me the same things that other doctors have told me.  I really want answers & a treatment that helps me feel better.  I also he he can help me get my medications compounded since my insurance has changed their coverage & make it hard for anything to get covered any longer!

Those crazy mast cells!

Well I am going in for the contrast portion of my brain MRI & praying this time they can get a vein!  I have to be sedated for MRIs because I am claustrophobic & the thought of a needle makes it even worse!  My retina specialist asked if anybody in my family has MS (my uncle did, he died in a nursing home at 39 yo) and mentioned white matter lesions & insisted I return for the MRI completion.

Next week the wait is finally over!  I am going to see Dr. Afrin in Minnesota for mast cell activation disorder.  Right now I have it as autoimmune urticaria.  Thing is, while my skin is doing better, nothing else is doing better.  I have been waiting months for this appt!  I hear he is such an awesome doctor & that he is very understanding.

My hip is doing better.  My bursitis is worse however.  The nerve pain is finally almost gone!  After about 5 weeks of suffering my PT tried the EMS (? i think that's it, similar to a TENS) above the pain & below the pain and it started getting better the same day.  I have been doing my TENS at gome as well.

I will be seeing a new neurologist next month.  I will see my surgeon in 6 weeks & get the MRI ordered for my knee, probable ligament reconstruction.

I am really upset that my compounded medication is no longer covered by my insurance.  I was reading that they apparently tried to stop covering all compounded medications, that is ridiculous.  Apparently I also owe about $2,000 for pharmacogenetic testing!  I called them with the CPT code & was told I didn't even need a prior auth & yet now I am told it's not covered & is unappealable!

I have been low on spoons this week.  I have a pinched nerve in my neck for 3 days so far.  No matter how I stretch it's not getting better.  I want to try my TENS unit but I don't know to place the pads.