Having serious symtoms

[Lilynette]

Okay i have a lot to say but first im 18 years old and i play guitar, basketball, video games, and piano. Well i used too. My symptoms started with numbness from my elbows to my pinkies on both sides out of random or with actvity like bball or guitar. Then i got a bone spur in my left hand middle knuckle right side if you feel there you should also feel the bone but mine is pushing out. Also the tendons on my hand slide off and buldge out causing my hand to tighten and become weak and unable to play music to my full capability. My right hand middle tendon always pops if i move it and it also feels weak but not as bad as my left. With just this i suspected OA. Later on i get crunching in my hands that soon spread to my toes, ankles, elbows, neck, and knees. Then a bone spur on my chest(sternum) in middle appeared thats causing pain like my chest will collapse. Now my neck crunches more and hurts also my back (spine) pain i can feel when i press on it. It also sometimes feels like an itchy sweater with burning sensations. It usually feels better with rest but the morning stiffness is bad in my hands and other joints. Its so complicated, these symptoms. But i finally found a rheumy which was hard bc my insurance is terrible im in US btw well he tells me everything is normal. Literally. And im so shocked by it i really didn't even get a chance to make my case. All my blood test were good but im ANA postive but he said thats normal also and anyone could have it. Im trying to get an MRI so bad. But my insurance... I really think i have OA and that my docs are looking for advanved things and not listening to my early signs. The crunching is constant and the rheumy didn't even care to listen. Ive decided to take matters into my own hands with my diet and in going gluten and dairy free. I just wish i had more helo than i do bc my life is falling apart and people look at me like everything is okay.

[tkrauska]

boy i really feel for you to have such isdues at such a young age. i am 60 and was diagnosed with ra just 8 months ago. i became frustrated by the doctors not listening as well and only wanting to pump me up with more drugs which only gave me a little relief. the most frustrating aspect has bern ... there is no "one" answer. the best solution varies from person to person. look into non-traditional solutions. what has helped me has been tumeric and a magnetic bracelet. the tumeric dramatically reduced the inflamation within 2 days and the $20 bracelet helped with the numbness in my hands. i have a child that plays everything (sports and music) and i can understand the frustration that you now can't do these things that you llove. don't believe everything that you read but read everything that you can. you have to become knowledgable because the rheumy won't teach you. i pray that you don't let this defeat you and that you'll find some relief.

[ShannonMFG]

Oh the frustration! I know it well. I'm sorry that you're going through this. Changing your diet is a great start. And I agree with tkrauska. With my RA experience it sounds more like nodules than bone spurs, but I could be wrong. I wear compression gloves to sleep at night because if I don't, I wake up unable to use my hands for an hour or so (they sell them on amazon). I also take Tumeric. I take ginger too. They really help with shrinking inflammation. Everyone is different. What works for one of us might not work for all of us. But you're going to have to find what works for you. Physicians are not trained in holistic medicine, only in big Pharm. And if your labs or their assessment doesn't point to a specific thing, they don't know what to do, so you're "normal". A lot of us have taken control ourselves and since I did, I feel better. Read everything you can, but don't believe everything you read, just like tkrauska said. I've been fighting RA for 6 years. It's been an ugly fight, but I'm finally winning. You also need to pay attention to your immune system. Do you get infections, such as bronchial infections, frequently/infrequently? Autoimmune disorders/diseases effect immunity. If it is an autoimmune disorder you have to protect yourself from illness. This forum is pretty informative. We don't mind speaking out! Some of us have decided we're better off taking our health into our own hands. I wish you relief. Check into essential oils too! They're amazing when you find what works for you. Just make sure the oils are 100% therapeutic grade. Nothing else, as the rest are not pure and offer no benefit. I hope you find something that works for you! Just don't expect anything to work overnight. But don't ever stop fighting. 💜💙

[kevg]

I know this is pretty much it . But find another rheumatoid doctor. I had to go through two orthopedic doctors before they said oh blood test good idea

[Hayakbikehike]

You've got to find a doctor!!! Can you change insurance? I don't know about your state, but in ours, you can complain to the Insurance Commissioner. You can also request fair hearings. Good for you on diet. I would do a lot of online research h, too, if you haven't. Do your parents help advocate for you? See if you can find an OA support group,

[mickeysmom34472]

wow, so much to deal with at such a young age. I am much older than you and was diagnosed 6 months ago with aggressive RA. This disease is something that no one sees so they don't think anything is wrong with you.I too live in the states where your life is in the hands of the insurance companies. I was started on methetrexate tablets once a week along with folic acid daily and meloxicam. This worked well up until 3 weeks ago, I started getting flare ups before the week was done. Rheumy started me on mtx injections, 20mg, and I did my first Sunday along with 5mg of prednisone daily. Well I am in a flare up now in my left wrist and fingers, thinking this is like starting with the meds again and wondering how long before I get relief. She gave me 2 samples of pen, after jumping thru hoops with insurance (UHC) they approved the pen for me but it will cost $399 for a 3 month supply. Are they crazy?? Dr gonna give me samples till we can find something I can afford, hopefully soon, I need to work. Good luck to you, keep moving and be aware that the pain is worse at night. Maybe the new medical marijuana will be good for us, lol

[Dedeols in reply to mickeysmom34472]

You can apply for help through Abbie patient assistance if you can not afford the pen. The pen has been my life saver. Insurance sucks esp UHC

[A-Faye]

If you have a teaching hospital near you ( or NOT near you) call and see if you can get an appointment at the Rheumatology Clinic.

That would be a State Run one.

You should not be turned away.

You might also be able to attend a Rheumatology Clinic at a Children's Hospital if that doesn't work.

If undocumented illegal immigrants in the US can have unfettered access to medical care with don't ask don't tell policies, our own children certainly should. I know you are 18 but that doesn't matter to me as a 64 year old with this dreadful condition. If that doesn't work, call your US Congressman or your State Senator.

Alice