Keeping My Head Up

Have been diagnosed with Hughes now for 6 months. Have been having most of the symptoms that everyone else gets. My GP is and ANGEL. He is trying to keep my INR between 3.5 and 4....this has not been easy an have only reached that target twice. I have lost vision in my left eye a few times. My GP referred to a neurologist as he has a gut feeling that ai am experiencing micro embelis issues in my head. So i am off for an MRI on the 15 Dec. Due to being claustrophobic I am having it done under anesthetic. (YIPPEE).

The most amazing thing happened though when i saw neurologist.....when i told her i had Hughes she said...quote: hmmmm...ok we need to monitor your vascular region in the brain more often and i think we need to get an immunologist on board too. Now i will also give you my beeper number just in case you have any issues.WOW!!!!! She then told me of some of the troubles Hughes can cause and that it is a fickle condition and although you can test negative you can still have the condition. She looked at a previous hospital record and said ......gosh you had this back in 2009 it showed on some blood tests they took then. I finally feel that I am not alone anymore. I have had days where I just hate this condition. When my legs ache.....and my head aches so much they give me morphine.....or when my blood is too thick and i feel like my body has doubled in weight. Or when i loose sight in my left eye. I am lucky to be here and have the support I have but sometimes i just want to crawl under a rock.........thanks for listening.

3 Replies

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  • Hello, a post with mixed emotions, awful like everybody else on here, for you to be so unwell... but balanced with what luck to have such a useful and progressive team around you. I could not be more pleased for you. All the Best Mary F,

  • Hi, So glad you have what sounds like very good gp's etc around you!

    You are def' .......( ok I didn't spell it all as I forgot to spell it!!!!) not alone!

    We are all here any time you want to talk, moan or scream!! I know just how you feel, take care hun Sue xx

  • I am glad you have a a supportive GP they are few and far between and as have been said above you are not on your own we have all been there and are happy to listen.

    Paddy

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