Hi been to the doctors on Thursday because I could not here any think he sed iv got fluid in my ears my left ones worse but told me just to leve it will go but take a bit to go then asked him to look at my arms and hand because for 2 weeks iv had a lot of Pain in them and they are dead I feel like they no blood in them and the pain as been as night as 10 some times been crying most of the days with it he put my gabapentin up to 4x 300 they take all the other pains away and make me sleep witch iv not been sleeping for a long time now but I get a bit better sleep now he think it could be my condition he's not sure I also asked how he was getting my in to see a specialist he's sed he's hit a brick wall he's send emails to leeds and not got nothink so I told him I had a list that I got off here he sed if I new the names of the doctors he would be happy to send me too them but don't think he will send me to London so when I got home I looked again and phone up the doctors and told them 4 doctors so fingers crossed I may get some where now thank to you all x PS how do u get a pic of your self up in stead of the yellow face x

18 Replies

  • Hi Lesley again,

    Sorry that you have not yet been referred to that APS-Specialist on the HSF web site, also quite near to your home.

    As I am from Sweden I can not tell you what papers you shall send and print etc. Look at your post one months ago what APsnotFab and Mary did recommend you to do. Those two ladies know everything about doctors and APS in your country. You can trust what they say.

    You can not go on like this because you may have a stroke.

    I have also bad hearing and Tinnitus and that has to do with APS! I am now in range with my warfarin so I do not have more clots in those regions. When the blood is thinned we feel much better. But the bad hearing and Tinnitus remains. What is once damaged will not be quite well again.

    I will keep my toes and fingers crossed for you if that helps.

    That photo of me (instead of the yellow picture) my daugter helped me with. It is from her I-phone. I do not know how to do it.


  • Thanks iv told him who's on the list now so fingers crossed I will get to see one in Leeds or Sheffield it's just I can not here that well iv got fluid behind my ears thanks x

  • Hi Lesley

    Thanks for your post.

    I hope you GP does refer you to one of the specialists from the HSF list.


  • Lesley

    To put a profile pic up do the following:

    1. Click on your name on the green bar at the top of this page.

    2. Click on Profile on the list that you will see.

    3. On the right of the next screen click Edit Profile.

    4. Then in the middle of the blue panel should be a button called upload image. Click on that and then follow the instructions.


  • Hi Dave done all that then when get to the last bit the blue panel they nothink in the middle saying upload so don't know I am lost on the last bit lol so if you can look for me again I will be grateful thanks for the help x

  • Hi Lesley

    I've just looked again and as soon as I click on the 'Edit Profile' button an 'Upload Image' button appears.


  • Hi, it will make such a difference to you, if your GP does refer you to somebody off our list, best of luck I am sure you will get an appointment soon, let us know how it goes. MaryF

  • Yes he sed he would do iv told him 2 of them in Sheffield too on the list so hope he will not hit a brick wall this time thank for your help xx

  • I am in Leeds to, please feel free to chat about who you get referred to as Dr Martin was good but he is retired now. I do have a consultant for APS but my GP is amazing and he does everything to help me.

  • It's Dr Martin that iv told him I am in Huddersfield so who are you seeing now then can you let me know plz you are the closer to me thanks x

  • And I only know how to talk on here don't know how you PM people on here but thanks and it's nice to know you are so near me x

  • Hello Lesley, I was under Dr Martin and he has retired, I am now under Professor Emery but I have only seen his team up to now. I have asked for an appointment with the professor because it is awful since Dr Martin retired. I can let you know after that appointment x

  • Thanks as long as I got some one that's know about APS in stead of seeing them that don't will let u all know when I get a letter x

  • Hi,

    Reading your post I realised it is exactly as mine. Ive had a buzzing in my ears for approx. 3 months now. Two days ago it got much worse not so much the ringing but my hearing seemed more acute and I couldnt stand to be in crowds as my hearing was picking up on everything but from a tunnel. Dreadful.

    I also have problems with hands etc. and I have seen my consultant in the last 4 weeks and he told me it is osteo arthritis and circulation problems. The problem is when my INR falls below 3 all my symptoms come at once and as ive been told to manage the warfarin myself it can change from week to week infact from day to day sometimes. Ive had this dreadful virus and it has really upset the APS and SLE. Ill get intouch with my consultant this coming week though it isnt easy to get to him I must admit.

    Just keep plugging away. Got to stop now as my knuckles are going blue.

    Keep in touch we'll all get through this eventually.

    Regards Diane

  • Did u get that Diane it seem to have gone don't know where x

  • No I did not send it by PM don't know where it whent never mind my doctor say iv got fluid behind my ears my left worse one and iv got arthritis in my right hand my thumb is the worse bit I could not bear people touching it befour and it's not as bad now don't know if it's my pain relief that's helped they never give me anything just told me I'd got it in both hand that was the remo who told me that nice to talk to you Diane where are you from xx

  • Lesley - to send a PM (private message), go to your name at the top of the page where there is a little drop down arrow. Click on it and you will see Messages. Click on that and you will see the word "Compose". Click on that.

    Now you have the ability to start writing to a person. You need to know what the members Forum user name is so before you do all of the above make sure you write that down to start with. Fill in their user name and you can add in other members if you are writing to more than one member. Fill in the title of your message and then write in the main subject field what you want to say. Thats it...send it when your finished!

  • Think so. Regards Diane

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