Not Shingles, much, much worse. My cautionary tale

Vitruvius

I posted a while back that I got shingles.  Well it turns out that I don't have Shingles, what I have turns out to be far, far worse. I know this is going to sound outrageous but I have finally been properly diagnosed and I have developed an extremely rare Autoimmune condition, the most virulent version of a blistering skin disease.  Without treatment 80% of sufferers die within the first year. I am to begin infusion therapy for this condition which should significantly improve my odds, but I will be left with a lifelong battle if I survive. 

I tell my story not for sympathy or support but more as a public service announcement to save yourself as a caregivers. 

Ironically the doctor who misdiagnosed me was a short term fill in for my regular doctor. This doctor bragged she was 70 and all her brothers and sisters had developed Alzheimer's but her (Anosognosia, yeah, probably).  A week later I ended up in the emergency room with my skin coming off, where they assured me I did not have shingles, I had Pemphigus vulgaris. Punch biopsies and six vials of blood confirmed this.  When I tell them I was under great stress and that was likely a trigger the doctors just nod but tell me there is no know reason for an outbreak and no evidence that stress can cause it. But I know it can not be a coincidence that this happened to me just weeks after my wife's placement in an MCF and the years of escalating stress leading up to it. I may well have a genetic disposition for this but in a normal life it would have remained dormant. (Like Lynne D I too have a medical degree via google). 

My DW is better off in her MCF, she is well cared for. Now that I have been stabilized I visit often, covered head to toe, as this condition is not contagious. 

My condition is incredibly rare, literally less than a single digit per million so this isn't going to happen to you, but something else might. I urge you to at least plan for placement, as hard as it may be, financially and emotionally. It's pretty hard to know when your stress levels have gotten to be harmful but err on the side of caution. I felt that the mechanics of DW's care were bearable, and I thought of her as relatively easy as she had few bouts of difficult behaviors. Nonetheless I feel it was dealing with the 24/7 delusions, agitation and confusion that took its toll. We have the resources for DW's placement but I didn't do it earlier out of a sense of love, obligation, partnership or whatever and now I pay the price and she is no better or worse off than if I had placed her earlier. 

I could go on with my sob story but I can't bear thinking about it anymore today. I will likely read and post little if a all going forward as I negotiate the wreckage of our lives.  

sandwichone123

Vitruvius, thank you for this heads up. I'm glad you are receiving the care you need, and hope it is effective for you for a very long time!

Dio

Thanks for sharing this info. Stress can bring out all kinds of dormant illnesses, just waiting to pounce at the first chance out the door. Please take care and wishing you all the best in your new battle. (((Hugs...)))

Mint

Hugs and prayers

Joe C.

Vitruvius, Your condition sounds painful! I glad you were able to get a correct diagnosis and treatment. Hoping you have a quick recovery & learn how to prevent future outbreaks.

Jeff86

Thank you for sharing your experience, Vitruvius.   It is indeed a terrifying manifestation of the effects of stress on caregivers.

I hope your treatment is successful and you will be able to carry on as best you can.   You’ve been a devoted caregiver and a thoughtful poster here, and if it is helpful to you perhaps you will return here occasionally and let us know how you are faring.

M1

Bad disease for sure, Vitruvius.  Please wear a mask when you go visit--for your own protection, the treatment for pemphigus will definitely suppress your immune system.  Definitely good in retrospect that you got her settled before this hit you.  Keep us posted.

Crushed

There is a higher risk of PV among Ashkenazi Jews.  So areas with heavily Jewish populations often have more specialists and treatment support 

Good luck  

Ed1937

Thank you for passing that information on to us. Yes, stress can cause all kinds of problems. I'm glad they have you on medication for it, and I hope it's something that can reduce the discomfort.

Colt99

Many of your words hit close to home “I didn't do it earlier out of a sense of love, obligation, partnership or whatever”.  I identify with all of that. 

Your other phrase “negotiate the wreckage of our lives” is rather haunting. Much to think about. Thank you.

Joydean

I hope the medication is helping and you start to feel better. It sounds so very painful. Please know we are here for you. When you just want to talk come back and see us. You will always be a part of this virtual family. God bless you and may He keep you in the palm of His hands. 

jmlarue

Oh my...as if you haven't been put through enough pain and trauma just fighting the dementia war. This is simply too much. I'm so sorry, Vitruvius. You are so right to warn all of us of the horrific toll unrelenting stress can have on our health. I've paid that toll, myself, but not to the horrific extent you have, God have mercy.