Discussions By Condition: Medical Errors

Misdiagnosed for too long-----

Posted In: Medical Errors 4 Replies
  • Posted By: gsch12
  • November 28, 2006
  • 11:11 AM

Approximatly 6 years ago, I awoke one morning and could not get out of bed because I was so dizzy. When I finally managed to get up, everything spun, severe nausea, and I could not walk in a straight line. This lasted for 6 months. They did thousands of tests and finally sent me to University of Miami. By that time I was getting better and they didn't know what was going on. I returned to work but, continued to have strange episodes of disorientation, strange visual phenomenon. I was never my old self again. I would have spells and they would do MRI's, MRA's, CT's, tons of blood work. I was also experiencing increased migraine headaches and continual blurred vision. I missed very little work because I couldn't afford to be off. 3 years ago, I again awoke dizzy. Similar to the time before yet different. Again, started seeing dr's, and they did all their tests and could not figure out what was going on. During this particular episode, I also had severe dementia and my speech was affected. I had times when I could not remember how to walk. This lasted for 6 months and they finally started sending me for physch evaluations, one dr said that I was crazy and another one said that there was nothing mentally wrong. After 5 mths, I started to improve and at 6 months, returned to work, but was never the same. Last year, I had cataract surgery. I went from diagnosis, to correction with lenses, to must operate within 3 wks. The surgery went fine, but within 2 wks, my other eye started having problems and I was having spells of disorientation. I went to the ER with disorientation, speech irregularities, severe photophobia(this had been developing off and on) irregular gait, etc. Again, all tests looked great. They thought I had had a stroke but, nothing showed on their tests. I insisted to be sent to a teaching hospital. I was sent to Shands in Gainesville. I was diagnosed with Disabling Migraneous Aura and severe sleep disorder. I have continued to battle with this for 18 months. I am now housebound and when I do go out for dr appoinments, I have to use a walker due to weakness. I have not responded well to the modes of treatments they have tried. We are constantly back to step one. It is very discouraging and I don't know how much more of this consistant pain, living with basically no outside communication,(all my family live away), and with a darkened house 90% of the time can go on. I now have an appointment to return to Shands next month. The dr there stated that I may have been misdiagnosed too long for them to be able to do anything. Unfortunatly, there has been very little research done on this rare and unusual condition and most dr's just scratch their heads. My primary physician stated, told me, you are living in limbo and no one knows what to do about it, until something changes or the aura breaks on it's own, there is nothing to do. I am extremely saddened by this whole turn of events. I have been in the medical field in one aspect or another most of my adult life. I do understand that there are some things that are puzzling. Dr's are only human!!! Thank you for letting me tell my story. I realize that it is long, however, I have honestly just gone over the high points. There is much, much more but, maybe another time. Does anyone have any suggestions? Just some friendly encouragement might be helpful. I will let you know what I find out when I go to Shands next month. Probably nothing. That is what has been going on since June of 05. Bless you all.

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4 Replies:

  • Bless you for your continued courage in your battle to get a diagnosis! Yes sometimes there are those that will just leave the docs shaking their heads saying we dont know what this is? Unfortunately, there is a human being trying to have a life inside a body that no longer lets them do what it once was able to do. I guess the best encouragement I could offer would be to find small ways to adapt, which I am sure you already have, to try and still enjoy normal living. Perhaps special sunglasses so you can enjoy the outdoors more? Is that even a possibility? I dont know much of the condition you suffer so I dont want to offend you on making stupid suggestions so I will stop. I was just so touched by your story that I wanted to write to say that I live in a body that betrays me every day. I have probable MS and can no longer get through a work day without collapsing in my car in tears from absolute exhaustion and pain before driving home. So, I have had to tell my husband that I may have to work only part time or switch jobs. This will not be easy on us financially. He doesnt quite get it because I dont show him or tell him how much pain I am in and since I have not been diagnosed yet, it is really difficult to get the point across. That is why I post here on the boards and read others posts. I just need to know I am not alone. So, I will include you in my prayer list from now till forever... that you will have some answers for yourself. And if the Lord can not provide answers for you than through you provide answers for someone else. God Bless You!Kathryn
    kitkat2 17 Replies
    • November 28, 2006
    • 05:30 PM
    • 0
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  • Dear Kathryn. Thank you so very much for your heart felt reply. I will also add you to my prayer list. So many days, that is the only way that I get through is with God's strength. Many days I would just like to give up, but, that is just not in my nature. I understand the financial burden that you face. I have been off work since June of 05. Thank God I have short and long term disability. However, that is not what it is cracked up to be. Sociality Security keeps telling me I can return to work. I am at the third stage with them and that will be a hearing in front of a judge. Unfortunatly they are so backed up that it has already been 7 months and may be another year before I'm even assigned to a judge. The system seems pretty messed up. But, I am trying to keep my chin up. I know that I cannot return to work unless something changes. I get very depressed being in pain daily and then being housebound. I know what it is like to go to work every day and just struggle to get through. I did that for quite some time. May God bless you and cradle you in his strong and loving arms. I hope that your husband can understand. Sometimes you just have to let them know just how badly you do hurt. You can't always be strong. Take care and I hope to hear from you again some time. Linda
    gsch12 11 Replies
    • November 29, 2006
    • 02:07 AM
    • 0
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  • I have 2 posts on this website, "shaking away" and "still shaking away." My story is a little different than yours, but I understand your frustration. I, too, suffer from severe headaches, but it has been diagnosed as severe TMJ. My neurological problems have never been diagnosed. The neurologists have pushed me mostly in the psychiatry, but the psychiatrists say my problem is not psychiatric. The point of my writing to you is this: Because I am unable to work due to my neurological symptoms, I have obtained social security for psychiatric disability. You might talk to the psychiatrist you said thought you might have a mental problem and see if you could get his/her cooperation in filing a psychiatric disability with social security since you seem to be unable to get anywhere with the physical disability. I fought this idea for a long time, but finally had to do something, as I am a single parent and unable to work for 2 1/2 years now. I recently was approved for social security for a psychiatric disability. My psychiatrist helped me because she knew I needed some kind of money coming in and the neurologists are unable to diagnose me.You situation is different because you have a physical diagnosis. However, you may still be able to get a psychiatric disability from social security if you suffer from chronic depression, etc., due to your physical disability. It's worth a try if you can't get any help otherwise.Hope all goes well with you.
    Anonymous 42789 Replies Flag this Response
  • Hello Dear Linda ,Kathryn : my prayers for both of you ..I really feel for you people and I came accross this weblink searching for some answers for one of my sisters who has hypothyroidism and she has excessive hunger and she feels tired if she does not eat and because of this, she is putting on weight also. she also feels feverish sometimes and just takes the fever medicine also frequently. The doctors do not know the problem and sometimes she feels very tiresome and she feels exhausted too. Due to this she feels worried too. We in our home keep telling her to just leave everything to God and praying that she feels better.Please leave everything God and I remember these words and mentioning. Please try to take only one day at a time and hopefully that may feel little better too. I guess, we need inner strength which will make us feel better and I know it must be very difficult and my prayesr for you and hope God takes away the pain and slowly you people and my sister feels better too.I am sure it will be ok in God's time and I guess we need to have patience for that. If we try to not think much of time till now and not of future.i guess it may become little easy to think only one day at a time..and anyone can handle one day at a time ..right? I hope we can all handle only one day at a time by God's Grace. Regards,BhanuRegards,Bhanu
    Anonymous 42789 Replies Flag this Response
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