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Behçet's UK
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Finally, starting Remicde!

Hi everyone,

I haven't posted for awhile...

I have end stage NEURO BEHCET'S DISEASE.

MY DOCTORS HAVE WAITED, UNSURE OF WHAT TO DO, AND VERY CONSERVATIVE - IF THEY DO ANYTHING!

Thursday, the 5th, I will get my first infusion of REMICADE. This should have been tried YEARS AGO! The NEURO only said he would set it up after I said, "I QUIT! SCREW THIS! NO MORE IRON INFUSIONS OR EMERGENCY BLOOD TRANSFISIONS. I HAVE NO QUALITY OF LIFE AND WE ARE ONLY PROLONGING THE INEVITABLE - DEATH."

I will try to keep you all posted about how it goes. If I have any side effects and how bad they are.

I know many of you wonder if YOU have to get REMICADE infusions, will it work, how fast and will you have side effects. Of course every one is different... But I HOPE, knowing some one that has, might help you decide.

Reading about it is one thing, questions and answers with a REMICADE patient, is different.

As usual, with me, no questions are "too personal". I am 65 and heard it all. I am open to discussion on everything BEHCET'S,THAT I KNOW!

( Even how to use an empty toilet paper tube, to urinate - without hitting 4 octives above HIGH C.)

We all share the same symptoms, there is no shame in discussing them.

Later, my BEHCET'S brother and sisters,

Cindy

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Cindy, there is no such thing as "end stage Neuro Bechets disease". It's not a terminal illness. Please think about other people before you post mis leading information. There are others on here who may not be as well researched, recently diagnosed and frightened. So if you can't post anything accurate, please don't post at all.

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Your comment is false. Behcet's can quickly and easily kill any one of us who has it. It is a disease of the blood vessels & therefore can affect and destroy any part of the body that contains blood. This includes the brain.

If you can't post anything accurate, please don't post at all.

And please do not call anyone a liar without at least conducting a simple Google search first to see if you have any basis for your claim. Those of us who "look fine" get quite enough of that in our personal lives without hearing it from other patients, thank you. This is a very unusual disease & presents differently in all of us. Who are you to decide someone else is lying about how it affects them?

There's always a small chance someone on the Internet may be catfishing, but why take the risk of abusing an innocent person? Who are you to insult a sick & dying woman? Shut your cakehole, fool.

ncbi.nlm.nih.gov/pmc/articl...

sciencedirect.com/science/a...

e-acn.org/journal/view.php?...

hindawi.com/journals/crinm/...

Just a start. Please be smarter & please be kinder. Thanks.

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Hi Julie,

If you want to believe that you are dying then go ahead, I won't take it from you. You go ahead and wallow in your own misery.

I myself have Neuro Bechets disease. I had a clot in my brain in 2014, an internal bleed in 2015 and a clot in my lung in 2016. So believe me I know. But I'm not dying! I'm also not terminally I'll.

I also look fine by the way. But anyway, you enjoy your misery and I wish you the best of luck with it.

I have to go now as I'm on my way to work!

Mary.

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I get it, Mary. You don't believe YOU are dying, therefore you don't believe Cindy or anybody else can die of Behcet's.

Whatever you say. Have it your way, and enjoy your day.

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Neuro Behcet’s, depending on the type, can be progressive and fatal. I had a nonchalant approach to my own diagnosis because I was only having seizures, and not that often. Then the loss of coordination began to worsen. I eventually spent a summer relearning how to walk, and still have collapses because of autonomic neuropathy. My seizures are moderately controlled with meds, but when I do have one, it’s either long and severe, or I will have multiple.

My doctor was frank with me, we think it’s just attacking nerves at this point, but neuro Behcet’s likes to go for the vital brain structures, and the damage once it begins to show up on the MRI isn’t reversible and is progressive. Once you get to a certain point, the damage reaches a level where the next flare up will likely be the last you have, or if you have continual progression, you can see the path ahead towards death.

The diagnosis is scary but it doesn’t need to be sugar coated. For some of us it IS traveling towards a bitter end and in that end stage patients know they are out of options before settling into hospice. My current relapse has me reorganizing life. It’s not pessimistic or fear mongering, it’s owning what is happening in my body, in our bodies. It’s different for each patient but being informed means knowing the good and the bad.

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I am very sorry for you and it wasn't my intention to upset you with my comments. Just technically bechets itself is not terminal. Less than 3% of sufferers die from it.

But my thoughts are with you and I apologise if my original post caused you any distresss

Mary

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NEURO Behcets!!!

Far from Behcets!

Secondary, progressive NEURO Behcets! Complicated by hemrroids...

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Also, it doesn't have to be neuro-behcet's to be fatal. In fact, that isn't even the most likely way it might get us:

"Death occurs in about four percent of Behçet's cases. Causes of death are most often intestinal perforation (hole), strokes, and rupture of enlarged, weakened blood vessels (aneurysms)."

my.clevelandclinic.org/heal...

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We are talking about NEURO BEHCET'S. THERE ARE 5 DISTINCT STAGES. LOOK IT UP!

Plus, I watched my mother and brother DIE of it.

This is not the place to rant. Send a personal message, if you feel you must.

I posted I was finally starting Remicade. Several people said, "Remicade is not new".

I NEVER SAID IT WAS NEW.

SO, SOME OF YOU ARE FUNCTIONALLY ILLITERATE.

I POST TO TRY AND HELP OTHERS. I KNOW THERE ARE MANY NEW PEOPLE, READING BUT NOT POSTING.

I INVITE THEM TO ASK ME ANY QUESTIONS, SEND ME A private MESSAGE.

I AM 65 AND I DO NOT GET EMBARRASSED - OR RANT AT OTHERS...

WONT YOU BE surprised WHEN YOUR BRAIN BLOWS OUT AND KILLS YOU.

CHEERS,

CINDY

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Just you keep posting Cindy if ppl don’t like what you say they just don’t have to look at ur post lots love curly x

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sure we will all die someday Cindy. Mind yourself, I wish you the best Mary xx

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