APS and Small Vessel Disease - MY MRI

Hi have any of you been told you have Small Vessel Disease or MS after an MRI my latest MRI shows I may have SVD or MS I don't think it is MS to be honest, but lately my dizziness and memory and ability to go out or have any sort of life is really impaired, even though I am on warfarin and aspirin and INR range 3.0 - 4.0 I am being referred to a neurologist and still under my Haematologist, who I really respect she is very good. I have been diagnosed with APS since 1993/1994

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  • Hi Im sorry to hear things are not going well for you at the moment. Quite a few of us have had confusion with MS and it takes a real expert to know the difference sometimes.

    I would suggest seeing one of the APS specialist listed on the Hughes Syndrome Foundation website or if you can afford it even Prof Hughes himself as this seems to be one of the areas that he gets patients referred to him about.

    Please keep in touch and let s know how you are getting on. X

  • I used to be under St Thomas but too ill to travel that far. I am seeing one of the specialists on the HF website, thanks to that I found her, I have many other illnesses, and a lot wrong, but the brain seems to be one of my worst areas, St Thomas found a lot in 1997 with an MRI scan and it was Graham Hughes that put me on aspirin and plaquenil, then with more clots and TIA life long warfarin and aspirin, then I was under Beverley Hunt until I became housebound and then moved 160 miles away, I hadn't seen anyone for about 10-12 years in the last couple of years my health has worsened in many areas. Not least of all my brain, I am sure it is the APS that has done it, as I have had so many clots and TIA's, it is the specialist on your website, that ran all the tests and is referring me to the neurologist. She is very good.

  • Hi I have Hughes syndrome and on warfarin. Problem with brain and lots of other things.

    I had really bad dizzy spell I couldn't move sometimes.

    I was put on Betahistine its for meunière disease ??? Disease which I haven't got, its cheap and doesn't have many side effect

    I have 16mgs 3times a day,ask your Gp if you can try it

    Good luck

  • Thanks for that, have you ever had an MRI ?

  • Hi,

    Yes I have been diagnosed with SVD caused by Hughes Syndrome. I too get memory, balance, brain fog etc.

    I have had three MRI scans and see Prof. Khamashta and a Neurologist. The neurologist suspects MS but can't do a spinal tap due to the fact I am on Heparin.

    The symptoms are so similar and I just view it as being poorly whatever the diagnosis. I have got white mater damage to the brain, which I'm told is the result of mini strokes.

    Sorry I can't give you a more positive response but hope you get some answers from your doctors soon.

    Take care

  • Hi I am sorry you have much the same as I have, I was diagnosed with Cerebral Vascular Disease in 1997, but suspect I had it longer than that, Now my latest MRI seems to show MS or SVD I don't think I have MS to be honest, it does seem like SVD from having APS (Hughes Syndrome) I have got a lot worse since a larger TIA or if may of been a larger stroke in Dec 2011 ... I have never stop being dizzy or not quite right, and don't feel 100% conscious I feel like I am half anesthetized, do you feel like that? Like you I would be able to have a spinal tap being on warfarin and Aspirin, have you only been on Heparin, or have you ever been on Warfarin and or Aspirin, I do feel for you and totally understand. X

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