[Erika]

Aw…all of you are the best

Thanks so much for your well wishes, prayers and concern. Apparently you have some pull with the powers that be, because I finally got to come home tonight. It is so nice to know that you have been with me, and that you will remain so. Oh…my fur babies are here too now .

Will catch up soon, but must get some rest and furry snuggles in first.

With love, Erika

[ewizabeth]

Get some rest and some snuggles from your fur babies Ericka! I'm glad you are home!

[doydie]

Erika, we know you weren't feeling well and you were going to see the doctor. Did he put you in the hospital? So glad you are well enough to be home and to check in. I'm sure your babies were glad to see you

[Erika]

It sure is great to be back home.
What an odd few days this has been.
Here's a run down:

Tues:
I went to the doctor and was sent to the hospital lab for blood work, urine tests and x-rays.
I dropped by the office after spending 4 hours at the hospital getting all that done, where I had a TIA (mini-stroke). I’ve had them, as well as seizures before, and apparently they are due to vascular spasms, but this episode was different. Usually the TIAs just cause me to loose my vision for a few moments and give me a headache.

This one was weird and started as a band of flashing light across one side of the visual field of both eyes. It was there even when I closed them. Then a few minutes later a stab of pain went through the back of my head and settled in the side of my brain. As that continued along with the light show in my visual field, the hearing on that side faded out and I became aware of an odd sort of memory loss involving names. This all unfolded in the span of around 10 minutes.

I had been sitting at my desk talking to an associate when the lights and then the headache started, but while we sat there talking, what disturbed me the most was the realization that I couldn't’t remember her name. Then as we chatted, I also became aware of a disconnect between names and objects; although I could eventually come up with the word-name of things, they didn’t seem to be the correct ones to use.

We had been talking about bed recommendations for a patient and at first I couldn’t recall what the thing that one lays upon was called. Eventually some names came to me but I couldn’t figure out if the word “mattress” or “foam” or a few others that I can’t remember now, were the right names to call it.

The same thing happened when our conversation shifted to a physiotherapy practice up the street. I couldn't remember the name of the street that clinic was on when my associate asked which PT clinic I was talking about, but it is the same street that our clinic is on.
I also couldn't give her the name of the head PT there, although I had it in my head. It just didn't seem like the right one to me. That PT and I have been friends for over 20 years. it was like that.

When my associate realized that I was having trouble talking and she asked if I was OK, I told her that I might be having a stroke. She called the ER and took me back to the hospital. It’s only three doors down from my office, so it was faster for her to take me than to call an ambulance. They were waiting for us at the ER.

By the time a CT of the head, ECG and an echocardiogram were done, my memory was back to normal and just the headache and profound fatigue remained.
The CT showed a small infarct on the right area of the brain, so I was given a medication to dissolve the clot. The ECG & echocardiogram picked up an atrial fibrillation, aortic valve insufficiency & enlarged left ventricle.

The ER doc suspected pericarditis and aortitis and/or aortic valve damage. Meanwhile the blood tests that had been done earlier came back with elevated platelets (twice the upper normal range) & elevated WBC, so an anti-coagulant was added to the mix.

After much fussing, humming and hawing, the initial assessment was delivered and I was admitted for observation and further evaluation.
1. Reactive auto-immune inflammation secondary to infection (although no specific microbial cause was found on further blood and urine tests.) It was suspected that there had been a staph infection a few months back that had gotten the auto-immune reaction going; possibly from chronic regional enteritis/Crohn’s Disease or from the gastric surgery that had been done in the summer; or from one of the usual other suspects: cytomegalovirus, parvo-19 (fifth disease) or herpes simplex. When in doubt…guess.
2. Mini-stroke secondary to deep vein thrombosis, pericarditis, aortitis, aortic valve compromise; all most likely secondary to 1.
3. Possible bone marrow disease/essential thrombocythaemia – a form of cancer

Wed:
Physical examinations, more blood work & more cardio tests.
An IV Immunoglobulin infusion, along with another hit of anticoagulant & clot busting drugs was given.

At the end of the day came the diagnosis: Reactive auto-immune inflammatory disease with secondary arthritis, pericarditis, aortic inflammation, aortic valve incompetence and compensatory left ventricular hypertrophy.

Thurs:
Talk of using prednisone or an Infliximab (Remicade) infusion; a monoclonal antibody that works against tumor necrosis factor alpha (TNF-a), and is used to treat inflammation due to autoimmune diseases like regional enteritis/Crohn’s Disease & RA.

I had Infliximab twelve years ago for regional enteritis and secondary amyloidosis, but started to develop antibodies to it after the second infusion. When I told them that, they said it was too risky to have it again because of the likelihood of having yet another adverse reaction.
IV prednisone was then ruled out because pf previous reactions to it as well, along with the risk that it would increase the platelet count further.

In the end it was decided that the best treatment may be the IV Ig, so depending on follow-up blood work, it will either be given as a high dose series that is infused over a five day period, or as a solitary infusion every few weeks. Until then it will just be continuing on the oral Ibuprofen and Diclofenac topical for the hand, wrist & ankle joints as far as medication goes.

Fri:
More observation, more poking and prodding, more blood work and then talk of doing a bone marrow biopsy & an aortic valve replacement. I think the doctors were getting frustrated from not being able to do much in my case, and may have simply been looking for something to do with me.

I nixed their two suggestions, and after threatening to start swinging from the chandeliers for entertainment instead of meditating (talk about being bored out of one’s skull); they turned me loose.
…the nurses mistook a deep meditative state on Friday morning for cardiac shock when the ECG monitor registered 40 BPM and set off the alarm .

Symptoms and joint pain have not changed from when I started this journey with a follow-up visit to my doctor 5 days ago, but at least I have some idea of what has been going on. It seems that the immune system went nuts over some bug a few months ago, and once it had dealt with that, it went on to attack the joints, as well as the lining around the heart (pericarditis) and the aortic valve.
I’ve always been an over achiever, so I suppose that it is no surprise that the immune system would climb aboard that train and become an over achiever too.

Personally, I think that the heart stuff has been there for years because I had pericarditis in 2008 as well, and although there was no indication of a problem with the aorta then, the left ventricle was slightly enlarged on retesting 6 months after that.
The cardiologist tentatively agreed, because he said that for the left ventricle to be enlarged the way that it is now, that the aortic valve condition has been there for some time.

He said that it may have become worse now, but that the heart seems to be handling the back-flow (regurgitation) OK at this point in time. He said that as long as it doesn’t get any worse, and so long as I don’t engage in strenuous physical activity, all should be fine.

I actually laughed out loud when he said that. As if I’m going to be out running marathons again.
Oh for crying out loud…I have MS and walk with a cane, both of which slow me up; plus autonomic neuropathy which keeps the heart rate below 60 BPM even on exertion. Those two alone pretty much assure that I’m not going to be doing anything strenuously without passing out first, never mind some narcoleptic fatigue thrown in for good measure.
With all due respect, that guy must have graduated from the Medical University of Duh .

In the mean time, I’ve been instructed to get some rest, continue with oral Ibuprofen, rub the Diclofenac compound onto the joints, and to return on Monday for the follow-up blood work. If nothing else, all the blood that has been taken for the tests will serve to decrease the platelet count.

I’ll also be pulling a few things out of my own bag of tricks, while doing a whole lot of hoping & praying that the “inflammation-fest” dissipates by the time I see my doc for a consultation on Thursday.

With love, Erika

[tkrik]

Im so sorry for all that you are going through. I will keep you in my prayers. Keep us updated on how you are doing.

[SallyC]

WOW What a trip! Glad you are off of that merry-go-round.
Make sure you follow that Duh Doc's instructions, OK?

[Debbie D]

Wow…sounds like a tsunami of an attack on your body, Erika.

The heart valve thing worries me…are they worried about scar tissue forming, making it that much more difficult for it to do it's work?
And your ventricular muscles can only take so much overexertion, as I'm sure you know…

No ABs for the pericarditis?

And for this whatever infection to affect your joints so much…wow you are experiencing a battle royal.

Glad that you took prompt action and headed over to the ER. Question: do NSAIDS lower platelet counts the way aspirin does?

Fingers crossed and healing prayers being sent your way as you continue to try to figure out how to get back to "normal"...

[mrsD]

Wow, that is alot to take in and process and go thru.

I am so glad you had such wonderful care though. Keep up your
positive attitude and enjoy your dog and kitty, Ziggy if you can.

[Erika]

"do NSAIDS lower platelet counts the way aspirin does?"


I don't think that any of them lower the platelet counts, but all seem to decrease the tendency to form clots.

The odd thing was that other than the platelets and increased WBC everything else came back blood test and urine wise as excellent. PTT came back in the normal/average range and my cholesterol ratio, as well as both levels are nearly ideal. Just the HDL is a little on the low side.

All of this really seems to be due to an ongoing inflammation reaction to some bug that has long since departed and nothing else. There are no signs of infection anywhere.
Trust me, they looked high and low...and in every nook and cranny everwhere in between, if you get my meaning

With love, Erika

[mrsD]

This is complicated and not common....I'm going to have to research this further.

but in in the meantime I found this:

http://www.nhlbi.nih.gov/health//dci...rm_causes.html

This mentions treatments:
http://www.mpnresearchfoundation.org...FYhcMgodCyUAbQ