What to expect at my first rheum appt.

[chelseylauer]

I have my first appt with a rheumatod doctor on Thursday. I have a nurologist and a gum specialist who both refer me a rheumatod for suspension of Behcets. My MRI came out fine but my mental issues are extremely dibilitatint. An eye doctor said my eyes were fine. Part of me is scared the doctor is going to tell me its not enough to diagnose me or that I will have to do another months worth of test before they diagnose me and offer any treatment. Part of me hoping I will walk right in, they will say it has to behcets and send me home with some medication to help...or atleast hope. But i dont want to have my expectations to high and then crash if they arent helpful but i also cant mentally prepare for the worse cuz my mental state seems to be getting worse. the fear of being like this forever, the impact it is havimg on my marriage, kids, and business, thinking i will be stuck as this lesser version of my former self. I have a counsler, i just havent been able to see her cuz of all this and I pray all the time....not to be healed but for grace, patient, and strength to endure this but its so hard (as you probably all feel this way or have felt this way) so realistic expections for me to have would be helpful....and maybe some "it gets better" stories. My 6 year old broke down crying today cuz he didnt want to go to school and leave me, he wants to stay by me cuz im sick...which warms my heart as much as it breaks it. I remind my children that we have to have faith...but it is still hard. Thank you!

[belle623]

Hi Chelsey

Thank you so much for sharing. You are encredibly brave for sharing story and for continuing to fight. Yes, all these things can happen; however like you said so can getting a positive result. Which can lead to feeling better. Small steps. Unfortunately in the rheumatology world, especially BD we sometimes go through a long list of rheumatologists. Hold on, and don’t give up. Unsolicited advice?

1. Keep a health journal

2. Take pictures of flares/symptoms

-this helps the doctors

3. Take time for you; even 5 min.

Keep us posted, we are here for you. May I ask where you are located?

Wishing you peace, healing and hope

Hugs

Ash

[chelseylauer in reply to belle623]

I have been keep notes of everything and taking pictures, which i continue to do. I had to swallow my pride last night and take pics of the genital stuff but as miserable i am....i feel my kids are suffering most, they miss the old me, so i took them...ugh. I live in Blue Springs, Mo.

[gillianTS]

Hi chelseylauer

Reading you message made me feel very saddened for you and I wished to say please try and glean as much as you can about Behcets before your appointment and look at what parts of the behcets condition fits with your symptoms please write a list of these to take with you it will not only help you prepare for your appointment it will help whilst you are there, please take someone else with you to the appointment too it helps lots. When I was diagnosed only last year I was at my wit's end having been through so many specialist over years, including a rheumatologist 12 months earlier, my hopes and expectations on the day of my appointment were so high I needed someone anyone to help me with my life not only from the pain and discomfort of Behcets but mentally I felt like I was not in a great place and did not recognise me and nobody did, I felt like a shadow of my former self and now I feel better though not fully but I know what I have and I have someone who understands and this great list of people too to help make me get to grips with this horrible condition. Please ask questions if the rheumatologist says this particular condition on your list is not part of Behcets then be happy to ask what could this be from and will I be able to see someone else who deals with this. I have been amazed by the extent of knowledge my rheumatologist has outside of her expertise regarding both related and unrelated conditions with Behcets. I was also very wary of time restraints on my first appointment and feared I would go on and on and run out of time so my pointed list was great it kept me focused, I gave a copy of the list to the rheumatologist also because it listed out all my other conditions and tests I have had on my journey which proved to be helpful in associated issues linked to some Behcets people symptoms. Make sure you ask about medications and how they will help with your symptoms and ask before you leave when you will have another appointment if you are not told beforehand and ask if there is anyone you are able to speak to in the meantime before your next appointment as some places have access to other staff members who know about Behcets. Stay strong and positive try to relax each day doing something just for you it really is important.

Take care, Gillian

[chelseylauer in reply to gillianTS]

Thank you for all the tips and advice!

[Jaxxi]

Hi chelseylauer, had my fingers crossed for you today- how did it go?

[LostOH]

Hoping to hear how your appointment went. I’m in a very similar situation. Years of weird symptoms but no one putting it all together for me.

I’m sending you positive vibes for your health and diagnosis. I know how vital a diagnosis is and wish you the very best. With diagnosis there is hope and a treatment plan Without it we continue to suffer the same but without validation, hope or treatment.