Maybe Behcets??

[Bee519]

I had some pain in the right hand almost 9 months ago which i thought maybe due to a sprain or injury or repetitive work. Visited an occupational therapist who sent me to physio. I couldn't continue until i knew what they were trying to heal.

Went to an orthopaedic surgeon...had scans done...found nothing. Had some nerve tests done...found nothing.

Had an incident whereby all of a sudden I could not walk...incredible pain and spasms in upper back and neck. Went to hospital did an MRI...found some scattered white lesions...saw 2 neurologists who were concerned it maybe MS. However it was ruled out and I was advised to see a rheumatologist. Have had a number if blood tests done and nothing positive shown up as yet. I have had an underactive thyroid for the past 8 years...some stomach upset over the past year and constant mouth ulcers for many years. Of late o also seem to be bruising quite easily and have a lack of appetite and have lost a few kilosnin a matter of weeks. In the past 8 months the pain which began in the right hand spread to the other hand, forearms, elbows and mid back. Occasionally legs and feet ache also. I have been on Lyrica and now on a 10mg Norspan patch which has left me with severe itching and burn marks. I also had lymph nodes show up and stay for a bit but since have gone down to hardly anything there.

Went to see the rheumatologist a few days ago who then did a pin prick on my arm and advised me that more than likely I had Behcets disease. I had never heard of this before. After almost 9 months of pain and being a medical mystery I may have a diagnosis. He has also requested a whole body bone scan. Just today after 48 hours I have noticed some very slight bruising around the pin pricks. Could I possibly have Behcets disease?

[ColdNoodleSoup]

Sadly there is no diagnostic test for Behçet's. Do you have mouth sores (like canker sores)? That's the "Hallmark" of Behçet's. Either way, you have to keep working with your doctors to get to the bottom of things. Persevere and don't give up! Even if not Behçet's, keep working with doctors to try and find help. Take notes, track your symptoms, and don't be afraid of getting second opinions.

Best of luck!

[Guna1003]

Hi Bee519,

I'm sorry to hear of your situation. I know how frustrating and draining all this can be when trying to find a diagnosis. From what you shared there are a bunch of red flags for Behcet's. Absolutely push your doctors for answers and get second opinions. You are your only advocate. I learned that this process of dealing with doctors and appointments is a full time job in which you are the CEO. I went 5 years allowing my doctor to send me here and there and try different things and never said "no I'm not comfortable with that" or "I want to try this..." As soon as I took control and started making requests and my doctor honored those requests progress was made. You have to trust your gut sometimes you know?!!! I wish you the best of luck in finding a diagnosis. Stay strong and stay connected here...this is a great support system! I have found SO much comfort here. People can really relate to you and it feels so relieving to know you're not alone. ((Hugs))

Gina

[gillianTS]

Hi Bee519

I was just wondering are you hypermobile only some of what you have written related to some of my Elhers Danlos (ED) symptoms which I was diagnosed with as well, the ulcers are associated with Behcets not ED it was the pain and the areas of pain you mention that I can relate to, I was passed around from one consultant to the next until diagnosed with ED last April and BD this April, the ED was a surprise as I knew I was hypermobile but not that I had not been looking after my body and joints correctly and things just got a whole lot worse very quickly. Thought I would just mention. Good luck and hope you can get some relief soon.

Gillian