MS probable, I wonder if i have hughes?

hello, i'm in the `probable MS' limbo land with atypical features. Slow ascending progression from toes now to thighs over two years, no remittance. Quite off balance, over active feet reflexes and spinal `inflammation' on MRI with ` spots' on brain.

I am seeing a neurologist who has not tested for Hughes. I don't see him for 6 months now. Can I ask my GP to test this or shall I ask for an ealier appointment. I get the ` liver rash' all over my arms and legs when cold in winter, my hands and feet are permamantly freezing, and my dad has had earkly heart attacks (41) and now various vascular ailments. I am scared of self medicating, (or indeed getting false hope re. MS) but I feel almost instantly (30mins later) better after taking a junior aspirin- i can feel my feet and knees where usually I have little sensation on the skin. Am I being overoptimistic?

Willo

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  • Sorry, I've just re read this. I don't mean that having hughes is easier- but the MS my symptoms are opinting at is primary progressive. No treatment, no let up and fairly grim odds to wheelchair and beyond within a few years. With hughes, the idea of strokes is terrifying, but it seems a little more hopeful in that there seems to be some treatmenbt, and something ` you can do' about it yourself. Hope that makes sense. I do not want to offend anyone.

    Willo

  • Hi, I can understand why are keen to look into this, neither disease is easy, and yes you can ask your GP to test for this, or refer you, one disease does not act as a monopoly in any situation, let us know, how you get on and what they say. There are plenty of papers you can download off our actual HSF site, and these would be useful for your GP. Welcome by the way. Hope you can get some answers. Mary F x

  • Willo it does make perfect sense and I believe I have read somewhere in a book by Professor Hughes he feels that Hughes is preferable to MS.

    I dont think you are giving yourself false hope if you feel a difference after an aspirin. My son always said he felt better after an ibuprofen and that too thins the blood.

    I would ask your GP to test you for APS, Professor Hughes told me this week it is an inexpensive test so it should not be an issue. Can you print off some information from the foundation to show the GP that you have some indicators for APS? That may help?

    Do tell us how you get on.

    Jade

  • hi Willo5 perhaps if your going to the gp to ask for hughes testing it would be a good idea to ask for testing for lupus disease also if you haven't already been tested as this closely mimics ms symptoms. This can affect any part of your body and organs. Its worth a thought. Good luck with a diagnosis as often for any of these illnesses it can take years for an actual diagnosis as they all mimic each other quite closely x x

  • I dont think it needs to be either or. The interesting thing is that the statistics for people seeing Prof Hughes who have been dx with MS and turn out to have Hughes are I believe to be around one in five. They are put on anticoagulation and their symptoms improve. How many people turn out to have both I dont know. The blood test is really cheap and certainly worth having done in more ways than one. Sometimes, if there was a negative blood test but good clinical history and no contra indications to try heparin a trial would be given for 4 - 6 weeks to see if symptoms improve. Proof is in the pudding so to speak.

    You need peace of mind and you must seek that out in whatever way you can so that you can have no regrets for later.

    I wish you well and will look forward to you letting us know how you are doing. x

  • HI and welcome

    I feel for you as my case is so similar.

    I was diagnosed with MS a year ago from an MRI showing lesions on brain and numbness in my hand.

    Its a grim diagnosis and after the initial shock and grief I decided knowledge was power and I was going to do everything I could to help myself!

    I got myself on Vit D, Vit B complex and Omega 3,6,9 and also started regular hyperbaric oxygen therapy.

    I also decided to read as much as I could and found an article about APS mimicking MS.

    I was astounded as I had been told I had this in 1996 following investigations into recurrent miscarriage (which showed I had marginally raised Anticardiolipin Antibodies) but was told by my gynaecologist that it would only affect me in pregnancy.

    I recommend that you read the article on the MS Resource Centre website as it will answer a lot of your questions.

    Folowing reading it, I put myself straight onto 75mg aspirin a day, contacted the Hughes Foundation and was advised to get a referral to Prof D'Cruz at ST. Thomas's.

    I printed a couple of articles and a few of the relevant monthly blogs posted by Prof Hughes on this website (He makes lots of references to MS/APS so they are worth reading) and went to see my GP.

    My GP was at first reluctant to make the referral as he thought the MS diagnosis was definate, but I persisted and eventually got the referral.

    My appointment is next week and I too am desperately hoping that I have treatable APS as opposed to not so well treatable MS, so I know where you're coming from.

    It may be that I have both, but I need to be on the right treatment for whatever I have.

    Please push for that referral/blood test and remember you can still have APS with negative blood tests and let me know how you get on.xxx

  • Good for you Mitzy! Please let us know how you get on next week. If its Monday I might bump into you there.

  • Yes good on you, perseverance is my middle name too! Mary F x

  • Hello and thank you all for the advice. I will go to the gp but i worry that they will think why didn't a neuro test for this. I have checked all the tests and there is 'plasma viscosity', that's not the test is it?

    Mitzyi hope your st.thomas consultation helps.

    Willo

  • Hi all I was diagnosed last year with bechets an lupus anti coagulant but when I went to my gp a couple of weeks ago unknown to me my consultant had also diagnosed aps which was a shock I also have fibromyalgia at the moment it's all taking it's toll been in antibiotic now 3 times since Xmas for chest infections feel so weak an tired enough of that anyway I just wanted to know if aps is hereditary as my mum was diagnosed lat year as well with ms wot do u think x

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