newly diagnosed

[shirley63_]

hi i was diagnosed today with bechets its been queried for a while but now confirmed a bit daunting so any advice would be great from anyone that also has this disease. it all started really as a child with mouth ulcers after mouth ulcers and as i got older the ulcers got more and more persistant and then a big one appeared on the tongue which ended up in me having to have some of my tongue removed as it failed to heal. they were sure it was mouth cancer. then finally i was told it was not and they were unsure of what it was . Eventually sent to guys and some three years later after having mouth ulcers genitial ulcers stomach ulcers aching joints cloudy vision and the odd small pimple spot on my legs, they have now confirmed bechets so now what !!! trail of meds can i still work ? although im constantly tired is there any help out there with beneifts etc, sometimes i can hardly drag myself out of bed and when i have the ulcers i can barely eat let alone speak, any advice would be great

Thanks guys

shirl

[billi]

Hi the quick response is YES you can do anything you want but on lesser levels. I have suffered with BD for 30 years but still managed to work on/off, have 2 more children, divorce and remarry. I also still travel but now just Europe as I and many others find changes....meds, climates, foods, water etc. do have an effect on the immune system. My best advice is REST when YOU need to, stay positive, try not to stress and enjoy your life as much as you can. It's only a life sentence if you make it that way. If you need more info please private message me on this site and I will try to answer any questions you have.

Hugs

Billi

[suzannenmike in reply to billi]

Hi Billi, what a sensible answer. I can add no more to it, you have got it in one! The thing is to just get on with life. There may be times when the disease makes you feel like nothing on earth, but rest and being sensible is the real answer.

[suzannenmike]

Hello Shirley,

The greatest thing is to get a diagnosis. It sounds as if you have suffered a long time, but now you can get proper treatment, and hopefully you will go from strength to strength.

The tiredness is always very difficult to deal with. As a woman, you want to get on with looking after your family, and friendships sometimes suffer because you cannot achieve what you would like. It is hard to explain this tiredness to non-sufferers because it is difficult for them to understand that, even if you look hale and hearty, you could be feeling quite the opposite. I have heard this disease described as like having rheumatoid arthritis, ME and Lupus all at once! Most people will never have heard of BD, so explain that you are a very rare individual because only one person in 100,000 have this rare disease!

I hope now you have been diagnosed your medics will find you a treatment which works for you. That is another problem. There are many treatments, but no drugs especially for BD. We have to rely on drugs developed for similar diseases (orphan drugs). It may take a while for them to find the right one for you.

Good luck, and welcome to the club. You will find we will answer any questions we can.

All the best, Suzanne

[runninggirl08]

Hi shirl..I would suggest u find a doctor experienced w behcets. Document everything so u can see what may trigger ur symptoms. I've battled for 30 years in and out of remissions. I find that I've gotten the best results w nutrition...eating gluten..dairy. and soy free. Also look ur toothpaste to be sure its gluten free..does not contain SLS...coconut oil helps w ulcers. Have ur doc check ur vitamin d ..b12..magnesium levels. Behcets patients tend to be deficient in these areas. Feed ur body well...eat organic healthy fresh foods..

.get lots of rest. And continue on living. Yes its a very rare disease but don't let it define u just understand the limitations u may have. I wish u the best

[Michja]

Hi Shirly, this sight is the best for finding info and chatting to others who fully understand your worries & concerns. The best advice it listen to your body, rest when needed it & sleep well. Walking is good for the body & mind.

Good luck x

[Miataman]

I agree with Billi, it is what you make it.

The way I see it, going without a diagnosis and going without meds is about as bad as it gets. Once you find a doctor you can trust, it will only get better. It may take some trail and error to find the right combination of meds for you but once you find that, things will improve. Most folks on here go a long time without a diagnosis. That is very common with BD. In my life stress and worry seem to make things a little worse. So try to cut your stress down. I have been on meds for 5 months and most my of symptoms are gone. I worry a little about some of the meds I am on but now that I have it under control we are slowly taking me off of them to see what the minimum I need will be. This community is a lifesaver. Talking to others is empowering you are not alone.