Doctors Diagnoses--questions, confusion, frustration

So I got paperwork in the mail today from my last visit with the doctor. And under the heading "diagnoses" listed: TIA involving carotid artery, Antiphospholipid Syndrome, Migraine with Aura, Demyelinating Disease, Paresthesia, and Sensory Disorder. That's a lot of stuff considering my Cardiogram was normal, my bloodwork was normal (this time) and the carotid artery ultrasound was normal. And my insurance denied the second MRI of my head and neck... so how can the doctor be diagnosing me with all of these things? Is it just based on symptoms? Are these just things he put on the chart in order to get insurance to pay? If that's the case these diagnoses need to be removed from my chart as to not cause issues with other doctors or cause confusion. I sent an email to my doctor for clarification. I don't really think I have all of those things. In fact, maybe I don't even have APS as I once thought. My tests years ago say I do but now my tests are fine. I sent a picture of my tests from before to Dr Hughes himself and he actually emailed me back! I couldn't believe it. He told me my test showed a very strongly positive anti beta 1 antibody and supports the APS diagnosis so at least I know I am not crazy but I don't know what to make of a doctor putting all of those things under my diagnoses portion of my chart and never talking to me about it or having any positive testing to support it. I'm so confused. It really doesn't matter anymore. I'm still basically being treated for migraines and that's probably as far as I will ever get. The Hematologist visit isn't going to happen now because of insurance. My next and only option is I am now seeing a counselor for depression. Why is it so much easier for me to talk to you whom I have never met than any doctor or therapist or person in my life. I cry all the time now. I just want to feel happy and have energy again. Sorry for the pity party but I am tired of not having answers.

16 Replies

  • ?????

    An MRI would confirm a dymyelating disease. I'm also very confused.

    A normal MRI of c. Artery, yet doc can confirm the origins of TIA? I'm not understanding.

    Doctors can be sued for fraud for trying to get paid ( reimbursement) by ins by falsifying patients diseases so I don't understand a doctor risking listing a disease for your benefit for your insurance coverage st the risk of his or her medical License.

    Why can't you go to a hematologist? If you once had a pos anti body to APS, you should auto qualify ins wise for heme appointment. That is easy to document.

    You've lost me. (?)

  • I'm lost too! It makes no sense to me why my doctor has put those things on my chart if I don't have them unless they are just there to get insurance to pay for the second MRI. The first MRI was normal. This doctor put all of those things under me diagnoses list but never told me that I was diagnosed with any of them. The APS is the only one I have known about for years.

    I don't know why I can't go to the Hematologist. The doctor said he was going to refer me but I still have no referral. Can't see a specialist without one. Insurance is denying the MRI because it is the second one within a short period of time. But the doctor wanted it done to compare to the first one because between the first and second is when I began to have neurological symptoms in my right arm and leg.

  • I understand what you are going thru and I am so sorry you have to go thru this. The first thing it seems any doctor will say is depression which I'm sure we all have do to this disease. I know it's hard but you just need to find a dr that is curious or cares. I went to a hemotologist last week that basically said my mother and I where lying that a dr would say my INR should be close to 4. By the way my mother is the board president of a hopita so she not stupid. I know I have had this since 2009 with the closest specialist in Cleveland but my dr in Louisiana is really trying to work with h him now. I would call the insurance and complain. I wish you luck and know a lot smarter people than me on here with try to go be you guideness. If I can help let me know or if your in the US and need to talk I'm here

    Good Luck


  • Hi,

    When you have HS/APS all those diagnoses may be included in this autoimmun illness as it can attack all our organs.

    Fantastic that you got an answer from prof Hughes so now you know that you are "not crazy".

    What anticoaglation are you put on or is it only antiplatelet like Aspirin?

    I have found that it is easier to write things down than to try to find words and say it out loud sometimes. Curious that I remember spelling in English as I learnt many years ago in School. Today my INR is a bit low so I had to take a Fragmin-shot.

    We understand what you say as we all have this illness. Other people do not understand as we look so well etc.

    Have a nice day!

    Kerstin in Stockholm

  • I am only on aspirin.

  • Toddzchick as you have had a email from Prof Hughes confirming your diagnosis and you have had positive antibody tests then you do have the disease as has been listed by your Dr. It's also possible that the disease may have caused these other things but Drs write on forms what they feel is the problem that the test they are ordering, in this case your MRI can confirm. The Dr is not trying to do anything wrong. Please do not doubt yourself, once you have this disease you will always have it even though your symptoms may improve and antibody tests may go negative - that's just a reflection that antibodies are not active as inflammation is being controlled. However that's still not a reason if you are having symptoms NOT to see if there is something going on so they will list past dx and possibilities.

    You need to work with that Dr and insurance company to get the tests that are needed. Ask your Dr to speak with the insurance company as it's possible some non-medic has not understood, BUT whatever you do don't give up!

  • I think maybe you are right and the doctor is in debate with the insurance about the testing he is trying to get. And maybe I will still get the Hematologist referral once it is straightened out. I guess you just need to wait and see.

  • Yes. This is what I'm suspecting also. This is why I brought this up in my response to you- I think there is some kind of concern in your doctors mind. He doesn't fully understand the disease perhaps so is a little gun shy?

  • Hi, if you passed previously then yes you have Hughes Syndrome/APS, and the response from Prof Hughes - great. You need a proper Hughes Syndrome/APS specialist managing your range of symptoms, sorry for short response, computer keyboard slowly dying! MaryF

  • I'm not sure what country you're in and what health coverage hassles you must deal with. But here's my experience

    I experienced one personally and I've heard a story from a close friend wherein doctors lied about insurance coverage. In my case, I wanted another round of physical therapy in hopes that I could postpone the hip replacement. My doctor told me that the insurance company would not agree to another session. I called the insurance company. This was news to them: the exact quote was "we like physical therapy. It saves us money."

    And in your case, an MRI that would establish whether or not clots are causing your problems would also, ultimately, save the insurance company money.

    And my friend wanted a second opinion before she agreed to cataract surgery. Her doctor said that would be "insurance fraud." She persisted, spoke with the insurance company and with other doctors, got a referral to a second opinion and found out that if she had agreed to the surgery from that first doctor her vision would have been severely compromised for at least six months and possibly for life.

    So,my suggestion – call your insurance company. Most of them have RNs, doctors or PAs on staff and available to consult with. I strongly suspect that if this question is put to them they will agree that an MRI is the best way to go.

    And to go back to my story: after finding out that the insurance company had not deny my request for physical therapy I asked the clerk, "so, how do I politely tell my doctors office that they just lied to me?" And the clerk said, "this is happened before. I will call the office and apologize for an error on our side where someone denied your claim. I will apologize and say that we actually approve of the physical therapy request. And we've told your patient to stop by your office this afternoon and pick up the prescription for physical therapy ." (when of course, my doctors office submitted no such request. )

  • Wow. A story like that makes you not trust doctors.

  • by the way, I am in the US in Ohio

  • A doctors life can be complex. I have other stories just as alarming and the other stories have informed me that often times clerks in doctors offices have a lot of power which they can abuse.

    If a clerk in a doctors office doesn't like you, has a son who just like your son, or is just lazy, that clerk may insist, that there is no point in writing another prescription for this or that test or intervention because the insurance company will not approve.

  • You have gotten some very good responses here.

    More often then not you must be prepared for anything and mentally armed( prepared) for everything. I would simply ask the doctor how he arrived at his conclusions? Why the insurance company is stating this? Good luck, Cindy in NJ

  • I sent my doctor an email with all of my question. He called me back at a time I couldn't answer so now I am waiting for him to call me again. Hoping he can give me an explanation. Meanwhile, I think my muscles are beginning to atrophy (I'm exaggerating here) from being in bed too much. So hard to get out of bed every day when I wake up in pain or just feel weak all day. 6 months ago I had tons of energy. I just don't know what changed and why.

  • Hi,

    Try to get up as we feel worse if we do not exercise or move our body a lot.

    If you have too much pain can you take a Paracetamol (Swedish name I know) to feel better?

    Have you found a Specialist somewhere in the US or do you have to go to the UK which would be difficult with the flight perhaps?

    Good Luck from Kerstin in Stockholm

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