Do anyone else have multiple auto-immune issues? - Behçet's UK

Behçet's UK

4,882 members4,155 posts

Do anyone else have multiple auto-immune issues?

Savagevixen profile image
Savagevixen

Hi all this is my first post, ao please be nice...lol.🤗😉

But to the point, i have hyporthyroidism post treatment for Grave's Disease, Diabetes Insipadous (aka water diabetes cause my brain is damaged), Chrone's Disease, rheumatoid arthritis, and i think another but having a senior moment. 👵🏽 Lol

Anyway i also suffer with a few other conditions like avn, small vessel heart disease, and of course eye problems🙄.

I was just curious if this condition likes to have company.🤔 Thanks for reading.

9 Replies

Hi SV (what a great name, BTW!),

I've had a bout with Diabetes Insipidus which near killed me until I realized what was going on (about the same time I was hallucinating that the moths were sucking me dry). I've had dozens of Mollaret's and/or other Meningitis which have left me dumber than a bag of hammers. Not Graves, RA or Crohn's though, poor Vixen :(

I've been dx with mitral valve disease only to have it dismissed - several times. But I do have a real 'bangy' heart that no one can explain: I can feel each beat....even watch a glass of water jump on my chest in time & I can feel the surge of blood to my fingers and toes after every beat.

Such a confounding disease, no? Hope things calm down for ya!

Wow DI can cause severe dehydration. I was nicknamed kissy pissy as a kid. Just thought i had a active bladder. I was in the hospital with a catheter bag. When the dr saw how much they emptied, he swore they double entered my results. He had them do it again the next day and told me I had DI. Said i urinate 3xs thw norm. I get dehydrated to the point of er visit at least once a month.

My heart beats to fast and too hard. Cardio dismissed it as side effects of my meds. I have this since i was 16, ugh. No blood pressure problems just beats too fast.

Im kinda of an oddity, my neurosurgeon told me to donate my body to science, so they can try to figure out how im able to live with so much wrong with me. Lol 😯 let me know if you ever like to hear how i made it here.🤗

How high is your pred? It can cause those issues.

Im not on pred any more. It gave me avascular necrosis, ive both my hips replace and my knee bearly in the no surgery group. Been off pred for 5 yrs .

Be careful if ur on long term maintenance pred. Ur joints die from the inside out. I usually hips first because they the biggest. I ended up in a wheel chair for 3 years.

LMAO as I actually looked up kissy pissy.....

I LOVE oddities! That makes you my best odd friend :) They won't even take my body - up to HERE with bodies, I'm told - lol. I only found out I had it when a wee clothes-moth told me (hallucinations) and I was in the Florida summer suffering from hypothermia (-94F). The moth said 'measure your urine', so I did; that's how I figured it out and went to my MD there :)

This heart business is weird? Did you ever have a full-body CAT scan? Managed to get one here (in the UK). Best fun ever!

OMG that temp😲 but that has to be the most entertaining way to diagnose a med prob.

I know, this heart stuff os weird. My dad dies because his pace maket malfunctioned. So heart issues really worry me.

When and who diagnosed u? I got dx 9 yrs ago. First symptoms appeared 19 yrs ago. 10 yrs to find a dx.

Got my dx 10 years back, but think it has to be way longer. My 1st meningitis was at age 18, than nothing until about 1997? Sure, some very odd skin stuff including pigmentation probs. Trouble was I was living in the US when mpost of this started to re-rear its ugly head. Had basis insurance, but with each meningitis costing between $10 - 80k, we were soon shafted out of the insurance. The DI meant 'a slow ambulance ride' back to the UK in 2007. The NHS were fascinated - took a year before they found out it was Behcet's. My Rheumy via a biopsy that went septic.

Your journey just goes to show how very difficult it is to 'pigeon-hole' this beastie. I've enjoyed our exchanges, SavageVixen - immensely! Hoping to do my first ever post tomorrow - I'll Dm you; I spend WAY too much time researching Parkinson's (hubby's affliction) and not paid much attention to mine until suicidal ideation became more prevelent (nowt to worry about...I've idealled before :) ).

So sorry to hear about your dad - bet it was a Medtronic pace-maker....

Stay sublime as you are! xxx

Wow u have had a rough rode to travel also. I also enjoy pur exchanges. It feels good to have someone eho truly understand ur struggle. Ive had sucidal thoughts on and off since i was 9. I kno exactly how u feel. I even called the hotline when the thoughts to do it was winning over the not do it thoughts. I actually got commited for a month bc of mental health. Im always here to talk about whatever, i truly kno the pains of BD. No judgement here ever. I need a understanding friend to be able to talk to, i hope u become one of those friends. We can help each other in this fight of the century.

Message me anytime. I dont sleep much. 😉

S'truth Vixen...just read about your hips & knee; you've been through the mill! I'll DM you X

You may also like...