Bechets disease?

[cbear28]

This is going to be long so bare with me.

I was diagnosed with crohns in August 2017, however in december this was proven to be a mis diagnosis. In the past year year I have been diagnosed with oestreoartirtis, raynauds, udifferianted connected tissue disease (suspected lupus but labs didnt fit), gerds, incompetent legs and a haitus hernia.

I have been in a flare (if something) since august 2018. My symptoms include:

- mouth ulcers, sores and inflammation

- vaginal sores, inflammation and itchiness and pain.

- joint pain and inflammation in fingers, elbows and knees.

-rashes. To date I have the butterfly rash, hives and a folliculitis type rash confirmed.

- headaches

- constantly inflammed glands in neck that come and go for months at a time.

- constant diarehea alongside slight inflammation and ulcers occasionally.

- stomach and chest pain.

- low temperature

- high skin reaction to inflammation. I have photos of my arm days after catheter removal that indicates positive patherology.

- infections. In the past year I have had cellulitis with tracking twice, shingles, 3 oral infections, 5 folliculitis like infections, numerous episodes of vaginal thrush and repeated sinus infections. The oral infections, thrush like infections and folliculitis like infections do not respond to antibiotics. Only steroids.

- itchy and painful eyes. No inflammation this has been checked.

- developed cysts behind wars. As soon as one goes another appears.

- dizziness.

- forgetfulness. I ca be talking and forget what I'm gonna say mid sentence. Forget words etc.

- fatigue.

Does this sound like bechets? Does anyone k ow of any other disease mu symptoms could fit?

I'm currently waiting for my second bechets clinic at a hospital however really wnat a referral to one of the centres of excellence as I'm not convinced where I'm at at the moment that they 100% know what they are doing. However I'm struggling to get a referral to one of the centres of excellence because of this clinic I'm under. Is there another way to get an appointment without a referral?

Could bechets (the disease not meds) cause all the infections I've encountered this past year? I have been told at my current bechets clinic it's a coincidence but I've never had infections before all these other symptoms appeared so find it hard to believe it's not all connected?

I'm at my wits end and just want to find someone who seems to know what they're talking about. I seem to be getting worse and going in circles at under my current hospital.

Tia

[Amy-Tenacious1]

You sound a lot like me. I'm going through the ringer with the docs trying to figure out what it is. Bechets and RP are on the table. Now. Been on a new round since September. So yeah, could be. I had itchy wrists last fall, then a cortisone spell made it pretty much go away and last week it broke into a lupus-like rash. No butterfly on my face. The thing with autoimmunes is that often they overlap so chances are it's not just one thing. Often it has to to do with collagen. This might not be the best article, but it gives you a bit of an idea what we're dealing with and why diagnosing any autoimmune is really difficult.

healthline.com/health/colla...

[cbear28 in reply to Amy-Tenacious1]

Thank you for your reply. May be being a bit slow here but what's rp stand for please?

[Amy-Tenacious1 in reply to cbear28]

Sorry, my bad: relapsing polychondritis. But when I read about collagen diseases I can pretty much pick out a little out of them all, which makes diagnosing quite daunting. My faith in getting a decent diagnosis dwindles day by day: I’m seeing doctor by doctor and I feel not one of them takes the time to talk to me long enough to get the whole picture. Or realizes what I’m going through and how it hinders my life. Feeling frustrated....

[cbear28 in reply to Amy-Tenacious1]

Sorry you're struggling. It is horrible isn't it. I feel like I'm in the same position. Know I need steroids but keep getting prescribed antibiotics which cause more issues and dont fix any of the symptoms they are intended to.

[Amy-Tenacious1 in reply to cbear28]

It's hard to say no to doctors, but I've started going to my gen. practitioner to just show and document issues. They don't offer me anything anymore there, they just ask what I need. I've started saying no to antibiotics, because I feel they have nothing to do with what's going on. I rarely have anything to do with actual bacterial involvement. I do catch every flu around. With my ongoing investigation at specialists I try to comply with them somehow, because of fear of saying no will halt the whole process. So I've gone through my fourth or fifth asthma test, which I told them it would be negative. I'm actually fairly disappointed with the tests being run: they've been done so many times over already I wish they would get on with something new.

This flare started in April, I got a time for a specialist in August, who referred me to hospital for a workup and consultation on MAGIC syndrome (Bechets&RP), which started in September and all the while I can't use Medrol, which I know would calm the situation and bring me back my voice and mobility and cut pains and slow the deterioration of my back. So yeah, a frustrating situation I feel we all have to live with.

[cbear28 in reply to Amy-Tenacious1]

Hi Amy

Yes I think I need to do both those. Go to gp for anything just so its documented and refuse antibiotics because they do nothing for certain issues.

I've been tested for lupus so many times I've lost count, but they wont diagnose it until bloods confirm (very rare) or I get vital organ involvement (which in all honesty is stupid because they should be trying to prevent it getting to that stage not waiting for it to get to that stage)

I've been in a flare since august 2018. For 6 months all my additional symptoms were blamed on crohns disease (which has now been proven as a mis diagnosis). It was only when I went for a smear test and the nurse saw the inflammation and sores that she referred me to a gyno specialist. I was then referred to a rheumo specialist at a different hospital who said my case was to complicated for them, so was then referred on to a teaching hospital to see their rheumatologist in July, at which point I was diagnosied with uctd. From there they referred me to their bechets clinic in november. I am supposed to be seeing that clinic again next month but no appointment yet and I keep getting palmed off when I call. I've requested a referral to one of the bechets centres of excellance but you need a referral and no one will refer me because I'm under this teaching hospitals clinic. I just feel like I'm going in circles and palmed off until I actually want a referral, and then I cant get one

So frustrating which I'm sure is not helping how I feel lol.

[Amy-Tenacious1 in reply to cbear28]

Well I'll keep my fingers crossed for you for next months appointment!

But yeah, it seems they wait for all hell to break loose before they actually do something! How's that helping communal economy with people not being able to work and every care costing a whole lot more than it would at a preventive stage. But that's the thing: if the doctor doesn't know what's going on he'll just dismiss you and you're on your own again with a comment to not google symptoms...

[cbear28 in reply to Amy-Tenacious1]

Completely agree it's so backwards.

[rooser1]

Sounds like behcets. Sounds like a bunch of inflammation. The two run hand in hand. Most autoimmune diseases do, and it takes a while to lower the levels of chronic inflammation.

the rule with behcets is to rule everything else out, this includes Lupus, crohns, ulcerative colitis etc. make sure those tests come out negative.

i highly suggest getting bloodwork done for b12 deficiency, as this can also create similar symptoms. anything under 400 needs immediate supplementation.

On your next endoscopy, get a disaccharide test done. this test measures the level of enzymes in your intestines, it is expensive ish in america- but many food intolerances are severely underdiagnosed- or keeping a food journal.

Things you can do to help yourself for the time being that is applicable to almost any situation when the body decides to go hay wire:

1. drink water. only water. a lot of it. 100-150 oz a day.

2. get all the sleep. not watch tv or a movie "rest," actual sleep.

3. Cut all sugars from diet. Even fruit for the time being. Cut all processed foods. Nothing from a box. No pasta, no chips, no dessert. Think whole foods, meat/fish, fats like avocado, evoo, coconut oil (amazing for immune system), veggies. any veggies.

I too, was at one point completely haywire. I was on 15 diff meds, all the symptoms and all the misery. As a research scientist, my trusty pharmaceuticals had finally let me down and I was desperate for relief. I ultimately made the diet change above, and everything started to turn around for me. I felt a difference on day 10. Took me a year an a half to get back to a half normal. There were good days, and bad days.

i hope this helps, dont get discouraged! be your advocate at the drs. demand tests, if not- on to the next one.

[cbear28 in reply to rooser1]

Thank you for your response rooster

I'm.already on an anti inflammatory diet. My gastro has recently offered a dietician to help vet everything under control so hoping they can help.

[rooser1 in reply to cbear28]

I meant to single out your thrush too, yeah i dont see many others with the thrush. Ive had it off and on since 17, 31 now. definitely directly related to the amount of carbs in my diet as well as concurrent stress load- as i am missing all the enzymes :0)

i am extremely sucrose intolerant, so i do not consume any sucrose. its is a lot of things- label reading has become mandatory.

[Mja75 in reply to rooser1]

I’m not sure if you are talking about oral thrush. I had it constantly and it turned out to be, in large part, related to an immunodeficiency that is common with bd and autoimmune diseases. Get that checked bkz if it’s abnormally low they can get you infusions of what you are missing.......

[rooser1 in reply to Mja75]

You talking about igA, igG, igM etc immunodeficiencies? I am select igA deficient. Last I read, there was nothing you can do about it though, The ivig infusion doesn’t do much for it unlike the other ones.

Do you know which one you had? Maybe I need to re research immunoglobulin therapies.

[Mja75 in reply to rooser1]

I am igg deficient. I think you are right about Iga.

[cbear28 in reply to Mja75]

Mines vaginal. Could this be due to the same deficiancies?

[rooser1 in reply to cbear28]

i am not sure of any links between flora and immunodeficiencies, other than the concept of if your immune system is so suppressed that the bad flora has taken over.

I dont think youll get a straight answer from a doctor on that one either.

gut health, and you;ve got the issues, affects so many systems.

Are you on any probiotics? Acidophillus is key for ladies health. I take a 8bil cfu acidophilus daily, along with a 23 strain from nexabiotic. Its something i started over 6 years ago, would not change it.

[rooser1 in reply to Mja75]

I was thinking about it last night and i couldnt remember where i felt igA was like oh okay, and it was my hematologist as well. I remember i asked him about infusions bc my old coworker got the ivig infusions, and those were like $800 a month- and he said it wouldnt affect me.

im glad the infusions helped you, i was re reading about them on the primary immunodeficiency websitre.

oh and yes, i always get the oral thrush. I dont get vaginal yeast infections. I had one, once, when they gave me an antibiotic for sepsis. made sense. i wasnt on a probiotic then either.

[BehcetsCoach]

Hi cbear28,

I'm so sorry that you're going through this. Getting a diagnosis is quite challenging, as you know. You have a great support system here!

Regardless of the actual diagnosis, there is ample evidence that supports the use of lifestyle and nutrition to manage autoimmune disease, particularly in conditions that are similar and/or overlap with Bechet's (i.e., inflammatory bowel diseases and MS).

I'm not sure if you're familiar with functional medicine, but it's a great emerging model of healthcare that focuses on addressing the underlying causes of an individual's disease rather than merely managing symptoms. A patient works with a comprehensive team including various specialists, nutritionists, and health coaches to create comprehensive protocol that's personalized to your unique situation and triggers.

One fascinating component of the latest research on autoimmune disease is the gut microbiome, which Rooser1 also mentioned (along with great advice! Thanks for sharing).

Here's the Abstract from a recent study about a specific gut microbiome signature associated with Behcet's and the acknowledgement that certain environmental triggers may be involved with disease progression.

Triggering Agents and Microbiome as Environmental Factors on Behçet's Syndrome:

pubmed.ncbi.nlm.nih.gov/305...

There are several ways to identify these underlying issues, including stool tests (microbiome imbalance), urine tests (mold and heavy metals), and blood tests (food allergies/sensitivities). While there may be one primary trigger for disease, often there are multiple offenders that come into play. The idea is to lower total inflammation in your body by addressing as many of these issues as possible. If you'd like to learn more about this, I'd be happy to answer any questions.

I wish you luck in your journey! Keep us updated

Sara Mushel, MS

The Behcet's Coach

behcetscoach.com

[SCMW]

Sounds familiar - if no one else has suggested it do look at your vitamin D level which has a role in inflammation and is so easy to fix. I felt much better especially mood wise. Keep a photo diary, this clinched my diagnosis. Check out Mala cards out of interest for which conditions are related to which - autoimmunes do overlap. Just keep going, it’s your health and I wished I’d battled earlier in life because I didn’t feel better & get on top of some of the symptoms until I was on first line immunosuppressants. Best wishes