What do you do when you Have RAre Health problems and Doctors can't help you?

“Asking people on the Internet” is not on the top of my list. You really should see another doctor.

Are you stressed out a lot? It’s amazing what stress will do to you and if doctor’s can’t figure out what’s wrong with you, it may be something they’re not catching. Sit with yourself quietly for a little while and you can usually feel a tense body. If that’s the case, you may want to try and relax a bit… Bath, meditation, reading, etc. usually help. But then again, I could be way off. Hope you feel better.

Oh and like @_bob said, don’t research on the internet for solutions. They’ll all just point to cancer. :) Just kidding… kind of.

Good health does not come in a pill. Check your diet…exercise and do so with a plan to get and stay healthy and fit. Make no compromises and stop making excuses!

Perhaps a therapist could help you with pain management.

If you have no health insurance, try to get into a ‘study’ that will cover your benefits. You should also sign up for medicare benefits.

Start with your diet. How are your sugar levels? Your cholesterol levels?

To silverfly: I’m not stresseed. My job is not that hard. And i do exercise daily and eat well.
I’m fit.

And I even get these pains when i’m relaxed at home. Even laughing hard, gives me chest pains.. So i avoid cracking up cause i get pain.

To the person who asked about sugar levesl and cholesterol. All is normal. I got blood test for this not long ago

But the doctor did say he wants to check me for marfans syndrome and scoliosis cause i have many of those symptoms. however, since no insurance it’s kind of hard

Every one can hazard a guess here. But if you have been to doctors, perhaps you are suffereing from pain neuralgia. It is often psychological and affects the joins, back and limbs. Although the pain is said to be psychological it is obviously very painful for the sufferer.

Here is an article on it. I am sure from this article you will find more info.

http://books.google.co.za/books?id=yRE18-PWITEC&pg=PA228&lpg=PA228&dq=imaginary+pain+neuralgia&source=bl&ots=FPgcT5MGkl&sig=QIBKaKdvaPXKCYeMndAhP_Az5yY&hl=en&ei=BhqfS47mNo_oM5rp_bgM&sa=X&oi=book_result&ct=result&resnum=4&ved=0CBMQ6AEwAw#v=onepage&q=imaginary%20pain%20neuralgia&f=false

Simply put, neuralgia is pain in one or more nerve receptors. Whatever the cause, known or unknown, it is not psychological. Keep doing what you can to find the cause. I have fibromyalgia, and some of the symptoms & pains can sound very strange to the average person.

If it were me, I would follow up on the Doctor’s presumptive diagnosis of Marfans Syndrome over random guesses from people trying to be helpful on the Internet.

He has the education and experience that none of us do. Plus, he has examined you IN PERSON as well as your medical tests and records.

I don’t know a whole lot about Marfans other than it is genetic in origin. Also, in most (but I guess not necessarily all) cases there are physical characteristics that accompany it.

One is an unusually elongated facial structure with a prominent jaw. Another is being quite tall.

The main reason I mention that is because the Doctor who pointed it out as a possibility has seen you in person and we haven’t. That counts for a lot.

I assume that there exist definitive tests which can confirm or eliminate his hunch.

I think it would be foolish to look at everything else under the sun and leave the MOST LIKELY one unconfirmed.

Perhaps the question that you need to be asking the Doctor and anyone else you can think of is “Where can I find financial help to afford the necessary testing to diagnose what is wrong with me” ?

So much of that depends upon where you live and what community resources are available.

Much of the solution for managing ANY problem lies in defining it. That should be your starting point. You need to be tested for Marfans. There is no way around it.

Start looking for and ASKING for financial help for medical needs.

Put that into Google along with your zipcode to give you a starting point. Then get on the phone and call every result for your area.

I know that being without medical insurance is difficult. But there are usually sources of help, even if only partial. But you have to be willing to do some detective work to find them.

Go find some help so you can get a definite answer one way or another regarding the Marfans. The proceed from there.

If it’s not Marfans, then you need further tests.

If it is Marfans, you can then find a specialist to treat it.

Define the problem first.

Never give up on finding solutions to your problems. In the meantime, tough it out. Keep your weight off of that ankle. If regular old movement (sans weight) doesn’t bother it, consider some exercises to reinforce the muscles and what.

And remember: it hasn’t killed you yet, so it probably won’t.