Thank you everyone for your help! I don't feel so "In the dark" now with this site and you guys on my side!

I still have a very bad headache this morning and with nothing for pain, I guess i just have to deal with it. I am trying my best to cope with not having anything for pain and trying to act like i’m normal when really i’m not. Even my family doesn’t really know how to deal with this so, they act like everything is fine and like i’m going to be ok next week or something. They don’t understand the complexity of my situation let alone the seriousness of it. That’s why i said in my earlier blog i feel so alone. I’m doing this all by myself!!! But now with you guys supporting me (people who understand) i don’t feel so alone. So, i called my neurologist this morning and i asked for a copy of my medical records from my gamma knife therapy… and he told me “No” in a very stern voice. Am i not entitled to “MY” medical records??? I don’t understand why he is so rude to me… Maybe it’s because i don’t have medical insurance at the time. But i just applied for medicaid which will be active soon… i hope. I just feel scared to fight right now. I don’t want to stress myself out anymore then what i am. It’s funny… growing up in Detroit Michigan, I was fighting my whole life. And now when I have a serious problem i am scared to stand up and fight and i don’t know why! I think it’s because i don’t know anything about my condition. I don’t know what to say… I don’t know. But i am learning slowly and trying to ask as many questions to people on here as possible. Thank you so much for your time.

You are absolutely entitled to a copy of your medical records! Sometimes some doctors will make you pay for copying them, but they cannot deny giving you a copy even if you have no insurance right now. It definitely sounds like you need someone on your side who can help you. I know you said your family doesn’t understand, but perhaps if you ask them for help they may be more willing to learn a bit more about this whole AVM business.

The doctors can’t deny you a copy of your records!! I would go over his head and demand a copy. Those records are always going to be there. For now, focus on getting better and taking care of your self.

Uh Daniel…that does sound strange to me. I would call back. There are 2 doctors in my family and they both told me that by law you cannot treat a medicaid patient differently from any other patient. Your job right now is to get well. I wish someone in your family could act as an advocate… in this case fight for you. Now take a deep breath and breath out…and scream at the top of your lungs. There is nothing like a primal scream to relieve tension!

Daniel, I am in agreement with the other members responses. You definitely are entitled to your medical records. I work in a large specialty practice and our patients only need to go to the medical record department and request the records - there is a form for you to sign and the department will call you when your records are ready. Are you able to go directly to the medical record department?

Thank you guys so much!! I am more focused on getting better now, then my medical records but i still need them for my records and for the medicaid office. But i am more worried about adding more stress to what i already have. lol I have someone from my new doctors office requesting them now anyways. I can’t stand that neurologist so i took all of your advice and i searched today until i found a new one that i think i may like. But thank you all so much!! I really don’t know what i would do without this website to help me…

Daniel, You are welcomed.

When I applied for medicaid, they got my medical records themselves. All I had to do was give them my doctors names, addresses, and phone numbers. I am glad you found someone to get your records for you. Thats one less thing you need to wory about. Get well, my friend :)

Yippee for you on finding a new doctor! I truly hope he makes this a little easier for you. And yes, this site is a godsend to so many. I am thankful for it every day!

Daniel, I am glad you are feeling more focused now. That in itself is a big plus for you. Good Luck!

Daniel I know exactly what you mean I've kinda been in the same boat. Dealing with all this alone and people just not understanding---I try talking to my friends about it and they get uncomfortable with it all and back off or suddenly stop wanting to talk, so I try NOT talking to them about it and they accuse me of trying to act like everything is "normal!"! So either way it seems I just can't win!!

And the insurance thing, yeah I had no insurance either when this thing hit me and while I was loopy on lots of pain meds, they asked me about my financials and of course I exaggerated because I had no clue what was going on and then they didn't sign me up for any aid. DOH! And so they say I need this and that done and I'm like you guys won't let me do "this and that" because I HAVE NO INSURANCE!! And they just don't seem to get it! Do I just show up and have it done anyways and file for bankruptcy in a year?? Everything is wink-wink nod-nod "we have to have payment in full before we do this procedure, but we're still gonna do it." My brain can't grasp these concepts yet, wish I had somebody to help me navigate and decipher this hospital double-speak!!

And I never got a copy of my records because I owe this HUGE bill, so does that mean I don't get a copy of those records until I pay them in full????? Oy!! So much to deal with!!

Hang in there, that's all you can do and just concentrate on getting better and deal with it all later.