Specialist in Sweden?

[Marit]

Hi! I really need your advise right now! I have been suffering from symptoms like swollen feets, fever, ulculers, skinraches and worst of all headaces and fatiuge for over 10 years now. Last year i got a thrombus in my tumb and finally the doctors started looking into behcets. Behcets is extreamly unusual here in sweden and they dont really know that much about it and after aloooooot of tests, that dont really show anything, my reumatologist say that i probably have "a mild" kind of it although i am "the wrong ethnicity". Im currantly on 50 mg imurel which dosent help at all and the doctors cant anwser any of my questions or give me any other meds. It feels like they think im making all of this up and it is so frustrating!

So, i put my hope to you 😊, does anybody know where i can find a specialist in sweden or if there is somewhere els i can turn to? Im getting a bit desperate 😩☹️.

Thank you! //Marit

[Hidden]

Marit.. I cannot help.. I am in Australia.. I too am the wrong ethnicity.. it is very frustrating... have you tried contacting Vasculitis UK.. they might have some connections they can help you with..

[LillaMy]

Hello Marit! I live in Sweden too. I got my diagnosis 2014 but have been suffering almost 15 years or more. I have got a lot of diagnosis and I was desperate and felt like doctors thought that I was hypokondric

I also have neurological issues and at last hade an appointment with a neurologist and he started to really look at my history and started to talk about Behcets. I got back to a rheumatologist ( I hade been there two times with several issues, but he said that I have "wrong" ethnicity. Not true! These years I have been reading a lots about this decease and now I "eduacate" my rheumy I can recommend a book (books) by Joanne Zeis.

I also participated in an webbinarium from a conferens in Italy in september with several specialists about Behcets.

I am 58 years old from Karlstad, Värmland.

Many, many stories is like yours, it takes a long time to get a correct diagnosis.

My meds are: Imurel 150mg daily, Colrefuse (Kolkicin) 500 micrograms daily, 5mg Prednisolon daily but more when I am worse,2400mg Gabapentin (for the neurological issues), Alvedon 665x3 daily, 500mg Naproxen daily plus extra Vitamin D+Calcium. I also am starting a new med for osteoporosis next week. Then I have meds like Xylocain when the ulcers are acting out in my mouth and "down there".

After my diagnosis and starting my new medication I have not so many ulcers. I still get them but not so sevear.

The meds only help but do not take away everything. Prednisolon is a good help but an awful med, it takes a long time to get of the meds!

There are not so many people here in Sweden with Behcets, I know 4 or 5. There is a Facebook group with name: Behcets Norden.

Many small countries do not have specialists. There are both good and bad rheumatologists.

I have a good one just now, .who is ok with that I now know more than him and listens to me I also have a neurologist, a dermatologist.

So sorry you are struggeling! Keep strong and read so you can get more information.

Hugs/Tarja

[Richard12]

Hi Marit

Here is the information about Behcets in Sweden

socialstyrelsen.se/raredise...

Have a look here about Behcets and a map of where people with Behcets live in Sweden.

The web site for European patients with Behcets is here - lots of info rareconnect.org/en/communit...

Hope this helps.

Regards

Richard

[distanttree]

Have you thought of working on your foods.

I find coffee causes headaches and mouth ulcers and dairy products cause inflammation.

Concentrated orange juice a rash on the chest..fresh juice a bit less so.

Black tea causes skin shedding in the mouth.. and possibly in the bowels.

It is accumulative. While the food is in the bowel, it will effect the body.

Read about acid and alcaline foods.

There are books about what to eat.

However.even then there are some of those foods that cause reaction.

It may take a few months of studying your system to establish a basic balance of foods which you are basically sure are safe ish..then slowly put one new food into the mix and watch the reaction.

You will be surprised.

Keep a food diary.

Then later you will be able to look at a food and know what it will do to your body......and eat it...suffer the consequences....and perhaps think...it was worth it...as an occasional treat.

A new journey awaits you. And some of it is fun. What are you waiting for?