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.

Hip surgery

Had my hip surgery on 7/28

Torn labrum debridement
Osteoplasty
Capsular plication
PRP injection

4 days on crutches & another week with a cane!

3 weeks post-op was doing great besides continuing nerve pain then BAM!  Turned to side & fell.  Pain is still there, ROM decreased, nerve pain spread so I go back again this week.

Dr. Afrin is my next big appt in a few weeks.  Mast cell activation disorders... In MN

I am still glad I did the hip surgery & planning on knee surgery for a ligament repleacement.  Everything just never goes as planned because of EDS

Thanks EDS

A few days after having my basal cell carcinoma removed I ended up getting hospitalized.

I started vomiting Sunday around 12am and that continued for about 3 hours before I went in.  Ended up lasting several more hours.  Finally got Zofran & still vomited, then Reglan & stopped.

Had a positive bacterial culture & they thought I may have sepsis, possibly colitis.  Ended up being gastritis.  I had fluid in my colon, nobody explained that to me.  Requested my records & I also have mild fatty liver, which nobody bothered to even mention.  Came home & spent the next 3 weeks with an infection & bronchitis.  Found this out by going to UC & getting sent to the ER again, had a jerk doctor with horrible bedside manner.

Had to cancel my stomach scope because of being admitted.  I do have a torn labrum in my hip & need my bone shaved down slightly.  Not sure when that will happen.  I figure it will only get worse if I let it go.  I got a steroid shot & it's worn off after a month :(

My WBC was high went down in the hosp & back up again, now back to normal.  My ESR was 69 at UC & my CRP was high too.  Now those things are better.  My platelets are now high & I had a reactive band for Lyme along with my BUN ratio being high again.  I ordered & paid for these tests myself!  I like being able to have control over that & the pricing was reasonable, although I can't afford it again.

I am still not feeling well.  My doctor has not responded to my results that I sent her.

I ended up with thrush because of my medications in the hospital & afterwards.  Had to extend my thrush meds because the Qvar they gave me to help me breath caused my thrush to spread again.

Wish I could get back to "normal."

Lots going on

I have skin cancer & need surgery to remove them.

I have a secondary mast cell disorder... Autoimmune urticaria, now it makes sense!

Got diagnosed with POTS & driving the 6 hours for a followup!  It is hard to find a dysautonomia doctor.  He is the only one listed for our state & there is nobody in the next state over.

I am getting an arthrogram MRI on my hip... Finally... May have torn the cartilage, it has been really hurting & spasming for a while.

Will write more later!

It's been a while

I still haven't heard from the EDS clinic.  I hear they are quite behind!

I am waiting to hear back from the Chiari Clinic in Wisconsin.  I was told I "may have a small Chiari" which set off some red flags... That's not how to measure.... And size doesn't matter!!!  I just need a diagnosis, because the neuro PA here, that I am not going back to see, says all my symptoms are.... Wait for it..... Anxiety!  I had a sleep study done & it said mild sleep apnea (obstructive) but of course he went back to anxiety for everything!

I am still doing PT for my shoulder, it's been quite a few month now.

About this time last year my finger turned purple, swelled & hurt!  It lasted over a month!  I went to the urgent care & was told I was having an allergic reaction & take diphenhydramine.  I went back to UC and got steroids & an xray that was normal.  I went to the ER & they absolutely nothing & charged a fortune.  He told me if it was an injury it would be necrotic.  I finally got in to a family health doctor and he did another xray (normal) and consulted a vascular surgeon and ordered a doppler to check for a blood clot (normal) and did a bunch of blood work.  Said I had Raynaud's maybe, and said it looked like "sausage fingers" or psoriatic arthritis.... Nope!  My CBC came back abnormal & I started Bactrim.... And felt like I was going to die by my ribs crushing my lungs to death aka an allergic reaction.  I got a call back from the Internal Medicine clinic that said yes I can be accepted as a new patient & can be seen asap due to a cancellation!  My new PCP changed my med to amoxicillin ( I can't take Keflex or Sulfas) and I started to improve, added on a few more days & was fine!

Fast forward to now, ring finger DIP joint swells & turns purple so I go to my PCP & she says oh 5 days like this must be Raynaud's (uuummm no I don't have gangrene, but if it really was Raynaud's you just did jack shot for it, thanks lady).  I ended up at UC & he said must be a soft tissue injury, go to a sporting store & get a finger sleeve.  So I drive, in pain, to 3 sport stores & they haven't ever heard of it!  It has now been 4 weeks of my ring finger purple & swollen at my DIP joint & now 5 days that my same damn pinkie is now swollen, purple, sore & getting pins & needles.  So I go back to UC & get..... You guessed it... Steroids! Is this sounding familiar to you too?!!  But he also ordered a nerve conduction test.  I see my PCP this week.  Steroids hurt my stomach no matter what & make all of my joints ache.  My finger seems exactly the same as well.

I have EDS type III and my chart says "hypermobility syndrome" even though I went to an EDS geneticist after waiting 8 months... And they won't change my fricken record!

I have a mood disorder due to a chronic illness & my neuro PA says I have anxiety.  I mean like the guy is obsessed with anxiety, he should have been a psychologist or psychiatrist because it's all he ever fricken talks about!  I told him I had a horrible day where I got lost, didn't even know what store I was in, completely disoriented & he tells me I had a migraine, or anxiety.  If I have a migraine I can't drive!!!  He wrote my diagnosis as migraine with aura.... i have told him MANY times I no longer have auras, since April 2015 they stopped.  I do however have occipital neuralgia or maybe it's pain caused my the Chiari, who freakin knows?!!

Why is it such a struggle for diagnosis?  Why do I get questioned when asking for another set of finger splints?  Why do they treat females like we imagine every damn thing?  Why do they become doctors?  Why do they dismiss us over & over until we end up with severe injuries or infections?  If my insurance will pay for things why do they tell me to buy braces OTC & have them make me worse?  Why does my physiatrist understand?  Why don't my rheumatologist, neurologist, PCP, ophthalmologist or any of my other doctors ask my physiatrist questions?  Why don't they communicate with my geneticist?  WHY AM I STILL TREATED LIKE A HYPOCHONDRIAC?  What more do you meed besides my EDS diagnosis?