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Scared of what the consultants have seen on mri.

Shrimpy321
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Hello everyone. 
 

So basically I have a long list of auto immune conditions of which I need life long medications for. I have been suffering with pulsatile tinnitus for a couple of years now and finally went to the doctors to see what could be causing this. 
 

I was referred to a vascular consultant who arranged an ultrasound; where thickened carotid arteries were found. I was sent for a brain and neck mri to rule out brain tumours for the cause of my headaches. Results came back fine, no tumors or anurysms on the brain. Great. Diagnoses of a rare condition called Takayasus arteritis. One week later I was asked to attend an urgent mri of my neck arteries which took two hours long (an hour and 15 longer than they had planned). I noticed during this, behind the mirrored glass, three consultants in suits appeared to look in on my scan. Fast forward one week and my consultant called me back in for more blood tests and briefly mentioned the brain specialist had noticed a problem with my lymph nodes and has requested a full body scan. Ok, odd but that's fine, didn't ask any questions. I expected to wait for an appointment through the post in a week or two. The next day I had a letter saying I need to call immediately to arrange a PET/CT scan (I was expecting another mri). I did and have this in the morning. I am so confused to what they have seen? I am soo scared as I have have had years of being unwell due to various reasons. What could they have seen? Could this just be nothing or have they seen something scary? I don't know why I don't just call my consultant and ask?? I feel so guilty asking as I don't even know if I am on the right lines into thinking this could be a 'C' scenario. 
 

Thank you for reading

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    Hi Shrimpy

    Sorry to her of your experiences. You certainly have been through the mill. These sort of experiences scare us and some people are even too scared to ask questions, although I think not knowing whats going on is worse than knowing as the mind will take you to worse case scenarios. I personally would call and ask for more information, the doctors are trained in communicating with patients in a sympathetic way and will understand your fears. No one else can tell you what they have seen. All the best x

  • Offline in reply to Magpiemaggie

    Thank you for your reply. 
     

    Yes I think the unknown is sending me into a deep hole and I'm working myself up. I haven't mentioned this to any of my friends or family, so I think needed to 'offload' and even just writing my post on here helped eased my anxiety. 
     

    I will ask at my appointment in the morning for a more thorough reason as to why I'm there. 
     

    take care xxx

  • Offline in reply to Shrimpy321

    Best of luck for tomorrow, let me know how you get on x

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    Hi Shrimpy, I know how anxiety can eat away at you.  How did your appointment go?

  • Offline in reply to Christmas2018

    Hello christmas2018. 
     

    Yeah the pet scan was fine. I am still no further forward into knowing exactly why I was there but to be honest; after the appointment I realised that my anxiety into wondering what ifs and whys isn't going to help me. All I can do is wait. I have another appointment with my consultant, that was already booked in, on Thursday. I will ask everything I need to there. Thank you for asking ️

  • Offline in reply to Shrimpy321

    Hi Shrimpy, your rare condition, is probaly something that most doctors do not come across and they are all putting their heads together and giving you every test possible to confirm their diagnosis. Health anxiety is terrible, I am going thorough it myself, urgent hospital appointment Monday.  I have told a few people about what is going on, can you not share with anyone?  Anyway, always here, for you if you want to talk. ps I love your beautiful cat.

    Lyn xxx

     

     

     

  • Offline in reply to Christmas2018

    Oh Lyn I'm sorry to hear your in the same situation! Yesterday I received another letter out of the blue for a respiratory medicine clinic appt (sent to me before PET). I have no idea what's so ever why this could be? It's not marked as urgent so I doubt there are any worries there. 
     

    I think it's not knowing what the doctors are thinking regarding your own health. Waiting for results would be fine for me if I knew what results I was actually waiting for. Nether the less time keeps ticking and we will soon have the answers/results we are waiting for. 
     

    I hope your appointment on Monday goes well and you are ok. 
     

    Kim xx

     

    p.s Thank you... My cat is called Elvis  ️

  • Offline in reply to Shrimpy321

    Good morning Kim, so,  has the Consultant confirmed your condition now that you have had the PET scan?  If so the respiratory medicine clinic is probaly something that is connceted. Have you spoken to your family about it yet?

    My anxiety is terrible, and my  husband who is normally fit as a fiddle has been having ongoing tests in recent weeks and I am worried about him too.  Today he seems very down.  I have avoided people since Tuesday but today we are meeting up with friends for a couple of hours.  Both of us can't really face it but it will probably be for the best rather than sit in our own doom and gloom.  How about you, are you doing anything nice?  Say hello to beautiful Elvis, I have two dogs, Sonny, a smooth fox terrier and Midge a long haired chihuahua. xx

  • Offline in reply to Christmas2018

    My respiratory appt was sent before I had my PET and that's why I am confused as this will probably have something to do with the MRI I had originally had. I have had no news back from my PET but this has only been two days now. I haven't spoken to anyone about what's happening apart from my partner as I feel I wouldn't want them to worry when I don't really know if I have anything to worry about? I always put other people's feelings before my own. 
     

    I don't know what you and your husband are going through but being on here I can imagine you are both in a worrying place right now. You are doing the right thing going out with friends to take your mind off things; even if it is just for the afternoon. Your dogs sound gorgeous. I believe pets can be the best therapy, they make you feel warm when your down and they're full of affection and cuddles. 
     

    Make the most of your afternoon and have a lovely time with your husband and friends xxx

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