Just needing some validation

[CJBmom]

My adult son, age 34, suffers with neuro Behcets and has horrible pain. He is on palliative care. He has eye problems, lesions, arthritic pain, balance issues and chronic mouth sores. He is depressed and feels alone. I tried to connect with the Behcets community in the US but it’s not responsive. He sees a rheumatologist who just tried various meds that didn’t work over the past few years. I just feel lost and he is reluctant to see any doctors. I am desperate for company of others who understand. He carries the genetic marker for this, my entire family was from Greece that is now part of Turkey. So it’s my side that passed it along. My husband’s family is 100% British, so it’s not his genetic background. But it’s the isolation and loneliness that is hard. And family sees this as him on too many “drugs”... any thoughts? Thank you. I’m sorry for all who suffer from this awful disease.

[magician]

Hello! Very sorry to hear of the difficulties and pain that you and your son are experiencing.

Your post is for validation - I do not know exactly how to respond to that, but I hope my message below might be of use.

I struggled with the non-eye symptoms as your son (though most probably less acute, as I was able to hold jobs) since my childhood. I was eventually diagnosed when I had severe uveitis in 2007. My condition eventually stabilized.

The ophthalmologists advised me to consult rheumatologist. The rheumatologist was very kind and responsive. Nevertheless, the rheumatologist referred me to immunologists.

The immunologists and ophthalmologists became my main medical team. I hardly need to go to the rheumatologist, though I note from countless readings that BD is normally under the care of rheumatologists.

It looks like you are in the USA - might it be possible to connect with Professor Yusuf Yazici- I don’t know his current practice whereabouts but he had a practice in NY not too long ago. He is one of the leading experts in BD (perhaps THE leading expert).

All the best

[CJBmom in reply to magician]

Thank you so much for your kind reply. Yes, we are in the USA, very close to NYC. We have consulted with a rheumatologist who is well known to Dr. Yazici, we are close to the NYU Behcet's center, but they didn't want to consult with my son, for some unknown reason. The rheumatologist told us that they often close out many folks because they have too much going on. I don't know, but his rheumatologist explained that the docs at the center (NYU Bechet's center) never quite believe that all the folks who say he/she has Bechet's, actually has it. There is no question my son does, but the center was not helpful, which surprised me. Our rheumatologist is in NYC and tries to help us, but I find it a lonely experience, as does my son. We have asked both the center at NYU and his rheumatologist for any support groups, etc. here in the NY area, even on-line, but no one responded. This forum seemed to be most responsive and from what I have read, so many people suffer in similar ways as my son does. So there has been comfort for me in reading that others have migraines, severe pain and all the other symptoms that go along with this disease. Sometimes it feels like we are all alone with this, even most docs don't know about it, and I think they often just google it (when we have gone to the ER for example) and then they really don't know anything about it, so it's frustrating. It's interesting that you have gone to an immunologist. That's never been suggested to us, but it might be a good idea to consult with someone with that background.

Thank you again for your reply- I hope you are doing well - and getting better all the time!

Best regards to you!

[Voula61]

Hello,

I am so sorry to read what your son is going thru. My heart breaks for him and for you and for anyone who is hurting and cannot seem to get help or some kind of an answer.

I’m 58, also Greek. Have NeuroBehcet’s and it took me over 6 years to get diagnosed.

There isn’t enough space here for me to list all the symptoms that I was experiencing.

Since I didn’t exhibit the classic Behcet’s symptoms, it was difficult to have any doctor take me seriously yet alone believe me. I’m not a dramatic person, but just like many, I suffered every day with tears and loss of hope.

I was continuously told there is nothing wrong with me. One day by chance I was referred to a neurologist who wanted to see me every three months, then gradually all the pieces came together. When all the pieces came together and she finally diagnosed me, she wanted me to see a Rheumatologist asap.

I then also called NYU to be seen and they declined to see me. Reason: they were not convinced I had Behcets. I mentioned to them, I was diagnosed, by a neurologist, nope not enough for them.

I going to go to Johns Hopkins for a consult. Then a friend told me about HSS and what a world leader they were in Rheumatology.

I saw Dr. Lally for my initial consult and immediately knew between her and my neuro, I had hope.

I’m not even close to where I was before I was diagnosed and very grateful to have these amazing doctors. They do exist, just a matter of time before finding them.

Don’t give up. Hang in there. I know its hard to see now, but there is hope.

Please message me at any time with any questions.

All the best,

[CJBmom in reply to Voula61]

Hello Voula61, Thank you, thank you for your kind and compassionate reply. I apologize for taking so long to write back. It sounds like you too have been through a lot. Doctors in the US do not know about the disease, typically, if you are in the ER, they look it up and try to sound like they know, but in reality, they don't. I know my son has been diagnosed with Neuro-Bechet's, and I find he struggles with word retrieval and memory issues. He will not talk to his rheumatologist much, as he knows the doctor usually prescribes another medication like the Humira or the Otezla, which he has taken but neither helped. I don't know if there is any medicine that works better - if you think a specific medication really helped you, I would love to know. It seems that the one hope is for remission and I would think that could be a long way off, if he gets to that. Most days are depressing, for him and for my husband and me. It's as if he can't plan for a future life, so many days he is exhausted and the pain is so disabling, it's horrible. Thankfully he has a good palliative care doctor who really helps manage the pain with him. So I am very grateful for that. His rheumatologist is Dr. Spiera, also with HSS, who is truly wonderful. At this time my son doesn't have a neurologist.

I don't understand the NYU clinic, I think they do a lot of research, and maybe they don't need to see patients. I don't know. I even wrote to them asking if they know of any support groups for folks with this disease and never got an answer.

Anyhow - I was very touched with your reply. It's ironic that you live close by, and it is comforting to know others who have this disease, I think both my son and I start to wonder if other people suffer like this. After I read several entries, I realize how many people do suffer and some have different ways of coping and managing the illness. When he tells me of the pain in his feet, his hands, his elbows (!!) his stomach issues, the skin lesions (everywhere) and so on, and then I read about this from other people, it's a strange feeling, at least I know he's not alone. I wish he would reach out for some support. He has become so isolated. He has his masters degree and had a very good job, but has lost so much of his life now. So I feel bad for him, and while I can't "fix" his life, I try my best to be supportive and helpful. I think I need more support too! But again, thank you for reaching out and for also telling me you are a Greek woman. I have tried telling my relatives in Greece about this disease, but no one has heard of it. I would have thought that at least they would know about this there, but not really. I hope you are managing better and that as the years pass, you feel better, and not worse. Any advice, or thoughts are always welcome!

Thank you again! Cynthia

[lesleyg]

I had about five months relief on a drug called sekucinumab. It’s a matter of targeting the cells that are causing the problem. I have been told by a Professor of Neurology that though we all have Behçet’s or NeuroBehçet’s, we present differently to the doctors and therefore treatment is a series of hit and miss until hopefully they find the right one. Hit and miss doesn’t sound very professional but hopefully you see what I mean.