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Even a strong will comes from a weak body

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by PNR2008, Sep 22, 2014.

  1. PNR2008

    PNR2008 Senior Member

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    This true story touches so many subjects that I had trouble picking a category but again I have less blood than the average person circulating in my brain so please bear with me.

    Some may know that I have been actively engaging in lessening my POTS symptoms by going to a clinic specializing in syncopy within a famous clinic. The tests have been harrowing; Tilt table test, QSART, hemodynamic study, stress test and others but I had scheduled them a month apart to recover and not crash horribly.

    I was having terribly painful symptoms about 2 weeks ago but couldn't really articulate them so I put off getting help until I couldn't stand for more than a few minutes, my legs and arms had weakness I've never known and I had drainage in my throat.

    During this time I made an appointment with my PCP but could not keep it because of dizziness and weakness. I was afraid to drive, it was an early morning appointment and I didn't get someone lined up to drive me. I kept in contact with her office, I was told to go to urgent care but got neighbors to take me to ER. When asked about my symptoms by the ER doc, I said I don't know but I feel terrible and I can't think.

    Thank God for this ER doc because he saw something in me that triggered a whole slew of tests that had me there for 5 hours. Some wouldn't be ready for the next day but he found I was very anemic, put me on Iron and Voltaren because my regular Vicodin was not helping the arm and leg pain and I was taking 3 a day instead of my allotted two.

    The next day on the new meds, I started feeling better and have improved every day since. The same day I also called my PCP to concur about the meds and tell her the news. I had called her office 3-4 times during this 2 weeks, was always promised a phone call from my PCP but was always given a message from an assistant or medical help. The same thing happened again and was told she's going on vacation and should speak with another doc in her group on Monday.

    I was blown away, first the call would have taken 5 minutes and second, the ER doc said infatically to get back to my PCP the next day to find out the source of the anemia. (I have never been anemic in my life). Now she wanted me to go to a new doc when she has been getting the reports from the POTS cardio all along.

    Then I thought, on Aug 8, my PCP and my rheumy got a letter telling them that I had 10% less blood volume and 20% less red blood cells. I know someone talked here on PR about low blood cell counts that don't seem to get addressed. I got the letter too and saw my POTS cardio, he told me the results but never once mentioned the word "anemia".

    By the time I really got the acute symptoms, I couldn't think straight, couldn't do much needed paperwork to save my home and couldn't get out of bed. I wanted to die yet couldn't grasp what I would say to the medical people and we all know how far we get without our ducks lined up in a row. Also I was taking my BP and hydrating so it wasn't POTS.

    It was on Sept 18, that I ended up in the ER, three doctors knew about my red blood cell count almost 6 weeks prior and never impressed on me what to do next, two didn't even call me to question it. I don't know what else to say.
    '
     
    ahimsa, Valentijn, Gingergrrl and 4 others like this.
  2. Tammy

    Tammy Senior Member

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    So sorry that you had to experience that...............and thank god you didn't end up passing out or something before you knew what in the heck was going on. I don't get it.............I just don't get it. Glad that you have improved every day since the ordeal. I suspect that you will let the 3 doctors know of the ordeal..............please let us know how you are getting on. Sending many hugs and well wishes your way.:hug:
     
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  3. ukxmrv

    ukxmrv Senior Member

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    This must have been quite a shock for you. First all of those tests and then the new symptoms and the result.

    Wondering how you suddenly became very anemic?
     
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  4. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Going to the ER is such a game of chance. It is ironic that you got a better doctor there than at the famous clinic.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @PNR2008 I am sorry to hear about your horrible experience but so glad that you went to the ER and got a great doctor who ran all those tests. Can you switch to a new PCP or is that an option? Hope you are continuing to feel better now that the anemia is being addressed.
     
    PNR2008 likes this.
  6. PNR2008

    PNR2008 Senior Member

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    @Gingergrrl I'm switching right now. Actually waiting for a cardio to recommend a PCP to me but the cause of the anemia needs to be addressed.

    Today I have no energy for this unending quest for health. Just too tired, it doesn't seem to get any better. Thanks.
     
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  7. barbc56

    barbc56 Senior Member

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    @PNR2008

    What an awful experience for you.

    This has to be so overwhelming and frustrating to process.

    Do you have someone to help you getting to appointments or with routine things that you need to put on the back burner for now?

    Hopefully, this is the first step to feeling a bit better.

    Wishing the best for you and update us when you can.:hug:

    Barb
     
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  8. PNR2008

    PNR2008 Senior Member

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    I have to go to the clinic alone but I have help with meals and getting to ER, @barbc56. Mostly I'm on my own and I must tell you it's finally catching up to me. I am exhausted, sad and feel I have lost way too much especially for the effort I've put forth but thank you for asking.

    Yesterday my brother forgot to show up for a job I asked him to do for me, his work is 10 minutes away and he was busy all week-end so he said Tuesday and forgot. He helps me the most but I don't ask for much. Well I felt invisible and couldn't stop crying. It's difficult to feel autonomous when many people even the ones you pay to take care of you don't hold you as important.

    He must have figured I was upset because instead of rescheduling he showed up later and took care of what I needed. All that emotion draining me and for what?
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    @PNR2008 Was your cardio able to recommend a new PCP? Can you get a list of PCP's in your area from your insurance co? I know this is a major crap shoot and better to get the recommendation but I was worried and don't want to you wait too long with the anemia.

    I am sorry also to hear about your brother forgetting to show up and it is so tough depending on others when we so desperately want to be autonomous. You are doing an amazing job and should be proud of yourself.
     
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  10. PNR2008

    PNR2008 Senior Member

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    @Gingergrrl

    I just felt that he would do the checking although the PCP search is still on. This is never ending but a PCP is the gate that everything else goes through so if that relationship is not good, it can really stop the whole medical process and may even kill a person. Unfortunately it takes an emergency or urgent situation to make a person motivated enough to change, that person being me.

    So much is asked of us just to keep our lives going, isn't it incredible?
     
    Last edited: Sep 26, 2014
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  11. PNR2008

    PNR2008 Senior Member

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    @Gingergrrl I edited the above and lost the first paragraph. ugg. What I wrote was yesterday I saw a very kind, gentle neurologist that heard my plight about the search for a PCP and he's looking for other diseases, one is small fiber neuropathy. He had 11 viles drawn probably bring my red blood cell count to 25% instead of 20%. LOL.
     
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  12. ahimsa

    ahimsa Rarely on PR now

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    What a horrible ordeal!

    (Edit -- Oops, I meant the earlier episode that you described above was horrible, not the kind, gentle neurologist! I forgot to add that sentence even though it was in my head ....)

    I'm amazed that you still have a sense of humor about the whole thing.

    :hug::hug::hug: Sending you hugs, and lots of rest, to help you heal. :hug::hug::hug:
     
    Last edited: Oct 1, 2014
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