Please help searching for a diagnosis in US

Please help searching for a diagnosis in US

Have retinal vasculitis abd branch retinal artery occlusion of my right eye. It was diagnosed last year but I was told this had been "brewing for a very long time". I was sent for an emergency rheumatology evaluation because the retinal specialist could see autoimmune type cells in my eye. 43 vials of blood and MRIs and CT scans were mostly negative and I still don't have a diagnosis. I have my first ulceration in my mouth now it is pretty large and not healing going on 3 weeks now. I have had a lot of sores rashes boils blistering you name it to my feet,face genitalia and random other areas over quite a long time. The past year I keep getting boils or folliculitis type painful sores on my peri area but not on the vagina itself. Behcets was on a short list of diagnosis but was quickly ruled out because of a lack of oral lesions. Now I have one but I'm also a smoker which I have read inhibits oral lesions fur unknown reasons. I have just about every other symptom of BD and according to ICBD criteria score a 6 without counting the oral lesions at all.

I'm desperate to find answers. I'm 45 and I've been sick my whole life. Gastro problems with Marlena spots all over my intestines. I could go on and on. My vision is blurred again in my right eye and I will be making an appointment ASAP for this. I can't afford or handle another you are fine just because my tests don't show what is wrong with me.

I've been convinced I have an autoimmune disease since the symptoms went into overload about 11 years ago. I know Behcets is by exclusion and there is no test. I have begun taking pictures.

Any advice on getting a diagnosis in the US would be extremely helpful!! I'm seriously concerned about losing my vision and a host of other symptoms I'm having. The pain has become a burning hot sensation that it different than my previous pain. Anyone else experiencing hot tingling pain mostly in arms and hands but generally all over?

13 Replies

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  • Hi. Your situation just sounds awful. I live in the uk so can't offer too much advice but have you been in touch with the American vasculitis foundation? My hope is that they could offer support and suggest who you might see to get a diagnosis.

    I am diagnosed with Behcet's but very rarely get any kind of ulceration. It is crazy that anyone asks that you fulfil all of the criteria. Are you on any meds currently for symptoms? Any treatment for your eyes?

  • Sounds to me like you do indeed have an autoimmune problem. It could be Bahcets, but it also may be So Sjorgan's Disease which is also autoimmune.

    nhs.uk/Conditions/Sjogrens-...

  • I received no treatment for my eye because no autoimmune disease could be found and my one month follow up showed some improvement. I'm on a lot of medications but nothing for any autoimmune disease. The few times I've taken steroids for respiratory infections or foot ulcers is really the only brief periods of time I feel good but they were short low dose courses.

    Sjogrens I test negative for the markers. The ENT I saw last week said it too but again no diagnosis.

    thank you both for replying. I'm going to see the retinal specialist then I will keep pushing for a diagnosis.

  • Time for a new doc if you can. OR you need to really PUSH for something. What part of the US are you in?

  • I live between Cincinnati and Dayton Ohio.

  • Have you seen a neuro-ophtalmologist for your eye? I saw one who thought I had Susac's disease, which is even more rare than Behcet's. Similar symptoms, but a diagnosis requires a retinal occlusion, which sounds like what you have. I did not have one, and my diagnosis is still up-in-the air. Please try to attend to your eye first. I've lost 1/4 of my visual field in my left eye and know how freaked out one can get. I hope you feel better soon.

    Robin

  • My eye doctor is a retinal specialist at one of the top eye centers in my area of the country. I'm seeing a different doctor now for an emergency appointment I'll keep you posted.

  • Hi again--I assumed your doc was a retinal specialist, but I'm talking about a neuro-ophthalmologist. I had never heard of one, until my neurologist sent me. I am in New Mexico, and there is only one in the state. See if you can find one in your area that your doc can talk with. Google Susac's syndrome/disease. Probably the treatment is the same as for the other autoimmune diseases, but it would be helpful for you and the docs to know. Yes, please keep me posted.

  • Thank you I'm here now so I will ask.

  • my.clevelandclinic.org/heal...

    Never been here and do not know much about it. Maybe better than where you are going now? I really hope things improve for you.

  • Either Cleveland Clinic or the Mayo Clinic may be where I need to go next. I'm having an emergency appointment now at Eye Institution where I live. They run all the imaging scans on my eyes so if anything is going on again they will definitely see it. My right eye is becoming a bit more hazy and I'm seeing blurred colors off of images again so we'll see very soon what is going on.

  • I saw a different retinal specialist yesterday as my right eye has suddenly worsened but it is healed up now. This was the second one who wants me to go to a major hospital with a team of doctors to find out which autoimmune disease I have. He sent the notes to my rheumatologist recommending that if she cannot find a diagnosis to send me to the Mayo or Cleveland Clinic fir evaluation there.

    I told him I feel like a hypochondriac he ensured me that something is happening and he mentioned Bechets on his own. Sjogrens I have all the symptoms for but my labs are always negative. Negative ANA etc. I'm HLA B27 positive but we ruled out AS last year. Basically I need someone to look at just symptoms and the BRAO w Retinal Vasculitis and make a diagnosis.

    It's exhausting and I'm so tired of spending so much money that I don't have to get no where.

    Susac's disease and Churg Strauss are also possibilities. When I researched the differential diagnosis for my eye problems it said specifically BRAO w vasculitis strongly indicates Bechets. I have my first mouth ulcer that I can recall now and only one time I had painful ulcers that were small scatters one side of my bikini area abd then onto both sides of my vulva and labia. They've not been recurrent at all. I know it's possible I will continue to have oral ulcerations then a diagnosis could be made. I'm considering quitting smoking just to see if that brings out more ulcers but from the reading I've done even a nicotine patch could inhibit the ulcers. Obviously I need to quit smoking anyways. Lol 😝

    I've been under a lot of stress this summer so perhaps whatever is wrong with me is being flared from that. I'm definitely in a flare of whatever as the severe pain has come back full force and I'm so tired I sleep 18 of 24 hours when I'm not wiorking or unable to work.

    You've all been incredibly supportive and it is much appreciated!

    Prayers,

    Christie

  • Hi there, do get in touch with ABDA in the US for more information and support. behcets.com/site/c.8oIJJRPs... Good luck.

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