Misdiagnosed as Pemphigoid, you're kidding me

[irish11]

Hi there all.

I was a poster here about year and a half ago I think.  And you will not believe my odyssey.  I am sick to my stomach with what I've been through, but I KNOW 

its DH now.  I know for sure, with no positive test and nothing I can do about that.

I remember squirmingitch was helping me a lot along with a few others and I could kick myself.

Here's my story:

 

I was here last year or more trying to get dxed by hmo, etc...being tossed aside not being listened to, not being helped.  I found this site a few years AFTER my symptoms started at the age of 49.  I am a caucasian female with no previous health problems.  NO one would test be correctly, in a timely manner, I was insulted, called a cutter, everything you can imagine.  Fast forward...last april I went to a well-known doc in utah.  I had been gluten free for 6 months prior, so that explains a few things.

Meanwhile always testing negative on the blood panel.  It was early a.m.  and I had a scalp biopsy where it came up inconclusive.  didnt RULE OUT dh, but didnt confirm it.  but suggested possible pemphigoid.

it was noted I had LOW IGA.....very important as i see now.

All the while being poo pooed about the gluten-free thing.  Not being able to get dapsone without a d--- dx.  So Im told to follow up with a doc in my area which i was doing.

He looks at the tests and declares "must be pemphigoid".  He is well known in THAT particular type.  I was sent off for IVIG, cell cept (immunosuppressants), prednisone, niacinimide, the works), and was told gluten had NOTHING to do with it.  We would fix my problem.  like an idiot, either wanting to believe or just giving up, i went with it.  I went BACK to gluten, but not full on....cuz something in the back of my mind still was unsure, because the dx was never really a dx.

My symptoms would wax and wane over this year but I never went ONE D DAY WITHOUT A BLISTER.  Never one.  And every time I went to my monthly appts the assistants would always say "any new lesions lately?" like.....I was on maintenance or something which i wasn't.  And I would always say "well I ALWAYS have new lesions, they have never gone away."  like, its not like a "new outbreak" from a remission or something.  And I always said that.

And I would always tell the doc that I was still getting them and i would always tell him my SYMPTOMS.  This is what tees me off.  I got so bad that I took a 3 month leave of absence hoping my treatments would kick in.  And prob cuz i had cut back on the gluten but not hundred percent is prob why sometimes i thought i might be getting better or have fewer of them, but then other times (like now) horrible mess.

I was practically suicidal, in despair, im on year 4 of these things.  So instead of researching pemph sites i decided to go back to what I felt it always was, back to DH sites.  Back to this site.  Where I see several topics that describe EXACTLY what i have been telling my "blistering specialist" all d year.

Scalp, back, face, neck, chest, and sometimes arm.  Back and Scalp the worst.  Always the same spots, INTENSE BURNING AND ITCHING....almost 24/7 although the intensity is worse at night.  My scalp would be WET in the morning, if i could even manage to sleep at all.  which for the most part i havent in years.  Havent used a pillow, havent laid down properly.  As i have sores on both sides of my head and my back.  how do you lay down?  anyhow....i described the oozing, the way they break open when i stick my fingernail in to relive it because as has been said, they burst eventually anyway.  They just fill up over and over and get bigger.

The ones on my scalp....i mean my scalp feels thick now, which it wasnt when this started.  its like oatmeal AND ooze.  i have blisters on both sides of my ears and under my ears and both sides of my neck and back and every time i wanted the doc to FEEL them since again i always feel not believed (its hard to see under the hair obviously and i get tons along the hairline).  Anyway, 3 months ago i was in so much pain with tangled hair in blisters that I chopped my hair butch...but not too butch cuz its too painful to touch them anymore.  I used to have long hair.  Even THIS was not getting his attention.  It will be a year next month on ivig, which is great for some things but doesnt do THIS.  I know its dangerous but i need dapsone.  And because i went back ON the gluten for all their d tests and now i have to start over going off it, i mean im crazed.  truly so angry .  My life has disappeared these past years.  almost lost my job.  you cant believe.  I would be trying to work and burning and itching and oozing and running to the bathroom with no sleep in sight.  I was in true despair.  I cant live like this.

One of my dear friends was like "i think you were right to begin with, you have to go back to that".  But like some other posters here I have wanted the DX so badly in case in the FUTURE with some new discovery they need me to have been dxed.  Its the hardest thing to accept, that you cant get dxed with something you know you have.  And i remember one appt with this doc that is local, and i was insulted for picking.  like i have ocd or something.  Im so tired of hearing that.

Everyone here that has it KNOWS its impossible not to.  Its NOT WHAT THEY THINK.  And they arent listening.  They are usually judging but not LISTENING to what you are describing.  This doc i have now has NEVER touched my scalp.  He just looks.  Well i know by talking to my mom, you cant "see" them very well under the hair.  So some belief in the patient must be involved.  omg.

And yet i was sent off to ivig treatments.  I am sick with what i am thinking right now and all i want is the answer.  I know i have it.  and i have to remain frustrated that i will never be official.  Apparently my low IGA might be a reason.  And i had it done on an oldish spot and i think he did it on top despite being a top guy.

 

I dont know, im just so done.  To think what i have lost these past years with the misdiagnosis.  My next move i already made.  Emailing the out of state guy just to let him know.  As far as my local guy?  I think im just not goiing back.   Im so done.  I think i was just a trial stat probably.  

If i just have to start over without any help, hell, ive already been suffering the most you can.  As an added, I DID TRY to get the endoscopy. And i went to my primary he shut me down "o you dont have celiac you tested negative"....clearly showing he doesnt GET DH.  doesnt get it.  what the h can i do.  I wanted to do it while ON gluten.  Its so complicated they dont get you just cant go back and forth like that.  It takes months to years.  I wanted to cry.

 

Theres more but.  Thats where Im at right now.  So glad this site exists to see people with familiar stories.

 

Irish

 

 

 

[ravenwoodglass]

So sorry you have gone through so much. Many of us can identify with your post so well.

I would suggest you make one more trip to that local doctor to say goodbye after you have been gluten free for a few months and your lesions have healed.

Do be sure to lower or eliminate iodine for a bit as that can keep the antibodies active. Some have to avoid all iodine from foods but I only had to drop iodized salt. Do add it back in after you have healed as it is an important nutrient. Also make sure you have eliminated gluten from your topical products. Gluten cannot enter the bloodstream through intact skin but yours is far from intact at this point.

I hope you have found the answer and that you heal quickly.

[irish11]

Thank you for your response:)  Its been pure H for me these past few years, and I get angry at all the sideways avenues they have had me down.  If they would just LISTEN to what you are saying as far as your symptoms throughout the day (not your 5 minute apt), then maybe with an open mind they can help you.

But most of the docs appear not that way.  They have their minds set, they are sure they are know it alls, and you're stupid or a psych case.  Gets me so angry:(

 

I'll watch the iodine.

[irish11]

Does anyone know if cellcept (immunosuppressants) aggravate DH or help it?  I think I should stop them right now if they don't do anything.

Maybe go back on pred for awhile (which I had weaned down to 5mg but im in too much pain and itch right now)

 

cant get in to see my unfavorite doc till next week.  where he will look at me puzzled and swear hes right, I just know it...LOL...but I have to try to get the dapsone.

Im In hell:(