Help!
Posted , 3 users are following.
My boyfriend is 26, and he is turning into a medical mystery. Two years ago he started experiencing shoulder pain and swelling, and it would cause his entire arm to swell and turn almost purple. It was extremely painful. After seeing several specialists, having steroid injections done and trying medications, he was finally referred to a Rheumatologist. They didn't even care to see him once they saw how young he is. They basically told him they didn't want to waste their time on him because anyone in their 20s wouldn't be having RA or severe arthritis issues. Cut to current time, and his knee has swollen up, pops out of joint and causes his lower leg to swell. Every single doctor he has seen has no clue what's wrong with him, and a different RA doctor brushed him off again. He's now having back issues, his other knee is starting to have pain and he's extremely tired all of the time. His father has M.S., and has plenty of relatives who have RA and other similar medical conditions. I guess my question is, for those of you who are in your 20s or 30s, how did you get a doctor to take you seriously? And a question for everyone is what do you do to help cope with the joint pain? I'm not dead set on him having any form of arthritis, but he has so many of the symptoms that I don't want to rule it out. Thanks in advance for any help.
2 likes, 5 replies
synnenatalia ashley79017
Posted
1989Girl ashley79017
Posted
Can you give more details on what doctors have ruled out and any abnormal blood tests or findings? I'm so sorry, what a horrible experience for both of you. If you keep posting on here and read online I bet someone can point you in a good direction.
ashley79017 1989Girl
Posted
Out of all of his bloodwork, the only abnormality was that he tested positive for one of the three strands of Lyme Disease. The doctor wasn't at all concerned because in order to have Lyme Disease because you have to test positive for two strands to be diagnosed. All the doctors that he has brought this up to haven't been concerned either because most of them don't even believe Lyme Disease is real!! He's been tested for MS and fibro, but he doesn't have either of those. All of his vitamin levels are normal, too.
1989Girl ashley79017
Posted
Sorry for my delayed response on here!
There is a forum group for Lymes disease through this website so my advice would be to go there and post all that you know about his test results for the 1 of 3 that showed positive result and ask has that ever happened to anyone else? Maybe could you get him re-tested for the others? What is the positive one called that he tests for? I can help you research.
When I was diagnosed with Reactive Arthritis I learned very quickly that the doctors were not going to be very proactive or helpful to me, which was a hard reality to swallow when you're already feeling so crappy. These online forums can be visited by doctors and you never know who else so post on as many sites and with as many details as possible, and often. I'm sorry you're going through this but it's so good that you have one positive test result to start out a search with. I'm willing to bet it holds at least a clue to his diagnosis.
1989Girl ashley79017
Posted
I'm re-reading your post and it sounds to me like he needs a rheumatologist that takes him serious and wants to trouble shoot his problem. With a family history of 2 autoimmune diseases that's a case for them - you're saying they just shrug and send him away when their tests don't reveal anything? There's no doctor actively trying to think of how to help him? This is so sad.