Bechet's disease?

[cbear28]

This is going to be long so bear with me.

I was diagnosed with crohns disease in 2017 however in December this was proved to be incorrect. In the past year I have been diagnosed with osteoarthritis, raynauds, undifferianted connective tissue disease (lupus was strongly suspected but bloods didnt come back as needed), gerd, incompetent les and haitus hernia.

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

- mouth ulcers, inflammation and sores.

- vaginal sores, inflammation and itchiness.

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

- skin rashes. I have numerous though confirmed to date include butterfly rash hives and a folliciltis like rash.

- headaches

- inflammed glands in neck.

- diarrhoea with (alongside mentioned above) slight inflammation and ulcers every so often in digestive tract.

- stomach and chest pain.

- low temperature.

- skin inflections at slightest bump (I have pics from a catheter insertion that indicates positive patherology tests).

- infections. In the past year I have had cellulitis with tracking twice, shingles, 3 oral infections, folliculitis like infections 5 times, thrush vaginal numerous times, and numerous sinus infections. Antibiotics do not work with oral infections vaginal thrush or folliculitis like rash only steroids.

- itchy and painful eyes (no inflammation this has been checked).

- developed cysts behind ears. As soon as one goes another pops up.

- dizziness.

- forgetfulness. Will forget what I'm saying mid sentence.

- fatigue.

I'm waiting on my second bechets clinic however really want to be referred to one of the centres of excellence but because im already under a different clinic, I'm not 100% convinced they know what they are talking about, I'm struggling to get a referral. Does anyone know anyway to get an appointment with them without a referral?

Can bechets (the disease not meds) cause the amount of infections I have had? I've been told at current bechets clinic that they are a coincidence. I'm struggling to believe this because I've never been one to get infections.

Anyone know of any other disease my symptoms could fit?

Tia

[ndstephens49]

Well, I hope my answer is not confusing.

In 1996, after dealing with Trigeminal Neuralgia and (?) many TIAs and severe fatigue and episodic confusion, I was diagnosed with several clotting disorders (APS, Lp(a), MTHFR GENE). So, I assumed all my symptoms were from clotting issues.

In August of 2000 I started having skin Issues and was diagnosed with vasculitis. Maybe vasculitis was causing some of my symptoms?

In December of 2000, I was diagnosed with nonhodgkins lymphoma. I was told that lymphoma may be more likely because of my immune/autoimmune issues.

I then noticed that my frequent issues with sinus infections and bronchitis and pneumonia really ramped up. I was tested for CVID (low serum immunoglobins-antibodies). Dang, I was born with CVID and all the infections I had in my life that were previously dismissed by doctors as ‘normal’, were not normal. I did not make antibodies. My B lymphocytes were defective and could not make normal antibodies. So, I now get IVIG every 4 weeks, IF it is available. There is a shortage of IVIG in US and maybe the world. So recently I only get it every two or three months. I had lived 65 years without normal antibody production to protect from viruses and bacteria.

Add in hypothyroid disease, Sjogren. Both autoimmune.

And add in heart failure, lung issues requiring me to recently need oxygen 24/7, and iffy kidneys. Probably results of all autoimmune issues.

I have trouble determining WHAT diagnosis is causing which symptoms.

I have many of the symptoms you list (mouth ulcers, daily headaches, joint issues, itchiness, rashes, GI issues, chest pain, belly pain, brain fog).

Since Bechets is an autoimmune disease, it can probably cause more infections.

Autoimmune issues tend to clump together. Once you have a list of Behçet Symptoms, make a list of your symptoms

that don’t seem to fit with bechets.

As far as infections go, I’ve had lots of infections since childhood which were not taken seriously. You don’t seem to have a history of childhood infections. But, who knows? If most of these new symptoms seemed to start with Bechets diagnosis, you would think they were related to Bechets. But remember, I was blaming all my symptoms on clotting. Boy, was I WRONG.

I think if I were you, I would write down every symptom I have or have had and when it started. Keep a diary of symptoms. Keep your medicines/treatments recorded in diary. Write down how you feel. Then keep an OPEN MIND to see if you make any connections between all of your diary notes.

Take photos and date them of any rash or other visible symptoms.

Have you seen a regular rheumatologist who can look at whole picture? Doctors who specialize in Bechets may have a tendency to focus on it and ignore other autoimmune diagnoses.

As I’m sure you are aware, ANYTIME you deal with autoimmune issues, it can get confusing fast. It’s only taken me 32 years to get where I am now. But, I’m pretty sure the doctors often get more confused more than we do.

All I can say is ANYTHING IS POSSIBLE.

WHEN YOU ARE TREATED FOR BECHETS, if you still don’t feel right, and it’s not likely due to Bechets, probably something else is wrong.

Gee, I’ve rattled on and on. Maybe I should erase this.

Good luck.

Nancy in West Virginia

[cbear28 in reply to ndstephens49]

Thank you for your response. Im sorry you have had to deal with so much.

Because I'm under investigation for so many things I am not under a specific rheumo so difficult because I have to start from the beginning everytime I see someone new.

I have considered lymphoma however my blood count is always ok and the glands seem to inflame on and off rather than it being constant. Though I am keeping an eye on it.

I defiantly going to start a dairy with what happens when. And a timeline of when things start. Also very good idea of separating symptoms into diseases to see what is left over.

claire

[TM1970]

Tia, your symptoms are not dissimilar to mine, I have lupus and crohns. They’ll call it UCTD until your bloods show the markers they need for dx or your body attacks an organ (I hope not) it takes many years for them to formally dx lupus, if this is what you have. I hope you find answers, I remember all too clearly the agony of waiting. Take care, Terri x

[cbear28 in reply to TM1970]

Hi Terri, thank you for your reply.

Can I ask which of my symptoms are different from yours?

Not sure If i will keep the uctd diagnosis if bechets gets diagnosed but would be interested to see what symptoms cant be classed as uctd/lupus x

[TM1970 in reply to cbear28]

Hiya, all your symptoms could be either AI, everyone is different, some symptoms sound completely nuts like trying to describe how my head was affected (before neuro dx cns involvement), I was crying trying to explain to a group of doctors (staring at me like I was an alien), that it felt as though I had ‘an electric toothbrush shoved up my nose’ 🤪 I can smile now but a lot of lupus sufferers will tell you in the days before dx trying to describe their symptoms was hard without looking ‘hysterical’. Terri x

[Mooka]

Wow you have been through so much. I can’t help with your symptoms but I can tell you I am looked after at addenbrookes. My local hospital wouldn’t refer me on there I went back to my GP who was happy to refer me. I understand that people go there from all over the country and your local health authority will make a contribution to the costs. I hope you get the answers you need soon and start to feel better.

[cbear28 in reply to Mooka]

Thank you for your response mooka. It's not been a fun few years.

The problem.i am finding at the moment is my gp wont refer me anywhere else because I'm already under a clinic, despite me not being happy with the service.

[Mooka]

I’m so sorry that you are having problems with this. I was being seen at my local hospital and wasn’t happy with the service either. I asked them about a referral and they said it would have to come from my GP. This was quite a few years ago. Fortunately my GP was happy to refer me but she did wait until she got the letter from my local hospital to say I had requested this. I’m not sure of your rights on this perhaps the helpline can tell you. It makes so much difference to see someone that is knowledgeable. You have enough to cope with without having to battle to be seen by someone with the expertise that you need.

[cbear28 in reply to Mooka]

Yea it's a pain, I've tried contacting the centres as well but mo response.

Only way to see them is through a referral which is no good when you cant get a referral lol.

[AmyS1]

Sounds very like Bechets or MAGIC syndrome. Try to talk to vasculitis uk and get a referral to a centre of excellence. It will make a huge difference to your condition and treatment. I think infliximab is widely used in Bechets with excellent results. Your GP can refer directly to a centre of excellence. There are only 3 in the UK. All the best.

[cbear28 in reply to AmyS1]

Thanks Amy. I will try contacting vasculitis UK. I've tried my gp but because I'm under my local hospitals bechets clinic (and getting no where) they wont refer me.

Are infections common with both diseases do you know?

[AmyS1 in reply to cbear28]

Infections tend to be as a consequence of immunosuppressive medications.

[cbear28 in reply to AmyS1]

Thanks for your reply. Makes this even more confusing then because I haven't been on any.

[ndstephens49]

Best of luck to you.

Nancy in West Virginia