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Thread: So tired of being 'possible'

  1. #21
    BlueRing, it doesn't sound like a sob story at all - indeed, many of us have experienced variations on that theme. I'm really glad to hear that you're finally being recognized and acknowledged by someone who is in a position to help you. You're so right - after living with these symptoms for as long as you have, diagnosis would come as a great relief. It certainly did for me.

  2. #22
    It reminds me of watching 'Mystery Diagnosis'. it can be so frustrating watching the Drs fleeb around being clueless. I certainly know that is the process I am embarking on...

  3. #23
    Senior Member marycsm77's Avatar
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    Quote Originally Posted by Oli View Post
    It reminds me of watching 'Mystery Diagnosis'. it can be so frustrating watching the Drs fleeb around being clueless. I certainly know that is the process I am embarking on...
    Oli,

    Since you are embarking on this diagnostic venture, so to speak, it would be a good idea if you establish with your physician (either this one, or any other you go to) that you intend on being a partner in your healthcare. You should really be aware of what you are being tested for now and in the future. This will give you some sense of empowerment and some feeling of control over what is happening to you in the diagnostic process.

    Also since you have stated through your posts that you are "freaked out" and seem to have anxiety regarding this process, have you ever addressed this with a therapist? Perhaps this is something that you can ask your physician about as well. The diagnostic process can sometimes be very long, tedious, frustrating and involve a lot of testing. If you have anxiety over your blood being drawn, it might be beneficial for you to try and address this while you are undergoing testing. It might make the process more endurable for you.

    You might also then able to address your memory problems as well and perhaps a therapist can help you sort some of it out. Not having memories since before the age of 20 years old under normal circumstances, is unusual.

    If you dont go back to the physician who drew your blood, you might think of starting with a primary care physician. Start from the very beginning. You had mentioned something about this doctor being a pain specialist or something of that sort? I'm not personally aware of any pain management md who is going to perform diagnostics on someone who doesn't have a diagnosis yet. That's not generally how it works. A PCP to start and then he/she may refer you to a neurologist.

    Just some thoughts, i thought might help you.

  4. #24
    Well, if I could 'come out' as a person with serious issues, here would be a good place because you guys are all SO nice.

    I have been seeing a therapist for about 4 years now. I have PTSD and a few other mental health diagnosis. That accounts for the loss of memory and the severe anxiety.

    My therapist and psychiatrist have been trying to work with me to get me some help for my pain issues and I just made a bit of a mistake trying to do it all to fast before I could say no like I have been all these years. I kind of 'jumped' before I could back out.

    My therapist had a plan to speak to the Dr. beforehand and stuff but I messed it up. I will try again with a different Dr. and do it right. And at least I got the blood work done!

    I looked up all the different tests that he is running on me and it is mostly autoimmune type stuff.

  5. #25
    Hi Oli. I think you are very wise to return to the original plan, being guided by your therapist and psychiatrist. It's easy to get ahead of yourself when you're anxious. Consider your experiences of the past few days as a "trial run" which adds to your knowledge base, and go from there with the expert help of your therapist and psychiatrist.

  6. #26
    Now you know you can do it. Snuggled your service dog and you did it. Facing that kind of fear is a big deal. Now, time to see how adding your tdoc into the mix helps

    Glad you are starting to get seen again!

  7. #27
    Senior Member marycsm77's Avatar
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    Quote Originally Posted by Oli View Post
    Well, if I could 'come out' as a person with serious issues, here would be a good place because you guys are all SO nice.

    I have been seeing a therapist for about 4 years now. I have PTSD and a few other mental health diagnosis. That accounts for the loss of memory and the severe anxiety.

    My therapist and psychiatrist have been trying to work with me to get me some help for my pain issues and I just made a bit of a mistake trying to do it all to fast before I could say no like I have been all these years. I kind of 'jumped' before I could back out.

    My therapist had a plan to speak to the Dr. beforehand and stuff but I messed it up. I will try again with a different Dr. and do it right. And at least I got the blood work done!

    I looked up all the different tests that he is running on me and it is mostly autoimmune type stuff.
    Oli,
    A lot of people here and elsewhere have more than just physical diagnoses and issues. I'm glad you feel comfortable enough to say so Hopefully with the help of your psychiatrist and therapist you will be able to wade through the process of differentials and diagnosis and be on your way to a more healthful life and good quality of life.

  8. #28
    Thanks for letting me share. Not everyone is so understanding. You guys are great and very supportive!

  9. #29
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    I am so sorry I have missed this thread for the last few days. I am the wife/caregiver of my husband who has a severe case of MS. I am so sorry you two are going thru all of this, the flip side to the story is. My husband was perfectly healthy one day and the next all you know what broke loose. He virtually walked into the hospital a day and 7 days later was on life support. They too tested him for every thing possible to rule out MS since there is no real test for MS. I don't mean to scare you from my post because that was all almost 6 years ago and things have gotten alot better. He is still unable to walk but with the right treatment many things are possible. I hope both of you find the answers you are looking for and get started in the right direction.

  10. #30
    Quote Originally Posted by MSWIFE1 View Post
    I am so sorry I have missed this thread for the last few days. I am the wife/caregiver of my husband who has a severe case of MS. I am so sorry you two are going thru all of this, the flip side to the story is. My husband was perfectly healthy one day and the next all you know what broke loose. He virtually walked into the hospital a day and 7 days later was on life support. They too tested him for every thing possible to rule out MS since there is no real test for MS. I don't mean to scare you from my post because that was all almost 6 years ago and things have gotten alot better. He is still unable to walk but with the right treatment many things are possible. I hope both of you find the answers you are looking for and get started in the right direction.
    Thank you so much for your kind words. I can't imagine how difficult that must have been for both of you. Were they doubtful of the MS dx because of his sudden onset with symptoms? Truly, your story gives me hope. Thank you for sharing it.

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