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Every time i see a doc they find something else wrong with me

Posted , 3 users are following.

claire0911
claire0911

I have been on here before and found it to be very helpful so im hoping you's can help again. I have fibro, was diagnoised shortly after they found blood clots in my lungs, they also found emphazimia in both lungs. I also have crps in my left arm where the dvt was. I hope you can keep up with this. I have a blood disorder, hemachromatosis, and now they think i may have non alcoholic fatty liver diesease. I have high blood pressure as well. On my last ct scan they found scarred tissue in both my lungs and they dont know what has caused it. This has all happened within a year and a half. I felt perfectly fine and was working full time. Now i cant work, have put on 3 stone, and my head is about to burst, and I really mean burst. I would be very grateful for any words of wisdom. Please excuse the spelling, since I have been diagnoised with fibro I can hardly string 2 words together.

1 like, 6 replies

6 Replies

  • Bee70
    Bee70 claire0911

    Posted

    Hi Claire

    It's quite frustrating knowing that one thing can lead to another.  Poor you, you have been through alot.  I try to trust what I hear from my GP's ? but I sometimes wander if they just looking to shrug symptoms off as to why it has taken them so long to diagnose the fibro sypmtoms.

    Gentle hugs and take care wink xx

    • claire0911
      claire0911 Bee70

      Posted

      Hi Bee,

      I feel that my Doc doesn't know what to do with me, and I dont blame her. She just keeps referring me to other docs. I am totally scunnered. I haven't even mentioned the brittle bone diease i have developed because i had to stop my HRT. lol 

      Gentle hugs being sent back x

    • Bee70
      Bee70 claire0911

      Posted

      With fibro everything is trial and error.  All will have different experiences of pains but we all want the same end result.  To be painfree and happy and most of all for my I need my sleep.

      Take care wink x

  • bronwyn97278
    bronwyn97278 claire0911

    Posted

    Morning Claire;  I am sorry to hear that sooo much has happened to you over the past year+......am feeling that you may be one of the unlucky few that have developed your clots from use of HRT....it is recorded that this can be a side affect from the Pill and use of HRT.....and having Haemacromatosis, wouldn't have helped either  (too much iron in blood, needing to be "bled" on a regular basis??)........the scarring of liver and other major organs is/can be a result of the haemacromatosis....perhaps what they feel originally to be Emphysema, maybe also scarring from same, do you feel??   both would cause "difficulty in breathing" and hardening of the interstital lung cells???..........do you get your blood regularly drained off....and if so, was this started as soon as diagnosis and how old were you when you were diagnosed with the Haematamacrosis?......all things put together including your "aching joints/arthrites" can be secondary to this condition, and no wonder you have to see so many Specialists (I think you GP is doing a Great job in referring you, as this is quite a complicated condition, and you deserve the best care....especially with lungs and liver, and other major organs).......look after yourself  (sorry for another Long Blog, I know others must get sick of listening/reading them)..............Bronrolleyes
    • claire0911
      claire0911 bronwyn97278

      Posted

      Hi Bron, Yeah i get my bloods on a regular basis. They have been ok, I think that is because i wasn't allowed to eat any dark green veg etc because of the warferin I was on. However that has changed in the last couple of months because i've been put on one of the new tablets, rivaroxiban. Its great because i dont have to go every week to get my inr done, but it may now put my iron levels up.  I was diagnoised at the same time i had the DVT, im 43. I asked them to test me because my brother is a carrier, where as I have the full gene. The lady doc i see for this condition.... I cant spell her correct title... has done a lot of bloodtests and testing me for auto ammune disease. What ever that is, i go back to see her as soon as i get the scan of my liver done.  Thanx for the reply Bron.... even just talking about it helps, If anyone asks whats wrong with me, they just laugh when I tell them, because there is so much going on. Im afraid to say a have failed to c the funny side for quite some time now
    • bronwyn97278
      bronwyn97278 claire0911

      Posted

      Exactly Claire; there is NO funny side to what you are going through.......an auto-immune disease is "where the body's Immune System Attacks it's Own (your) body"....there are many types of  auto-immune conditions (all of the Arthrites groups/SLE ,,,,)for some un-known reason.........what I mean't re "bloods", is do you have to have Blood taken from you regularly (as they do when someone donates blood......at least 500 mls each time)......into a Collection bag???    The reason they did not want you to eat Green vegetables is that they contain High levels of Iron, and because of your Hematomacrosis, you have toooooo much Iron in your blood, and this is upsetting your Major Organs............please keep telling us what/how you get on, as You Do have a Lot of issues, and to have Fibro thrown in, is  a LOT to have to bear.............thinking of you, Bron
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