Hi guys:)! I'm from Belgrade, Serbia. Two years ago I was diagnosed with Multiple Sclerosis after an episode of retroburbal neuritis. It was the only symptom I ever had so far. I was exmined at local Institute of neurology and MRI has shown small and rare focal lesions, without edemas and not typical for MS. But as oligoclonal bands were present in my SPF, they have decided that it is definitive MS.
Last year I've heard of Hughes syndrom and how it can mimic MS. I was advised to check my antiphospolipid antibodies, because I have had symptoms that were more asociated with APS, Sjogren's syndrom and even SLE ( pain in my joints, dry and itchy eyes, migrains, fatique,etc. ). To my big surprise it appeared that I am strong positive to Lupus anticoagulant! I immidiately visited reumathologist but she didn't even want to discuss APS with me and only gave me another diagnosis - Fybromialgia. She did't want to take into consideration my strong positive Lupus anticoagulant test..
The same was with other doctors, either they know nothing about APS or know a little something, but all together they don't want to question MS diagnosis at all. All that I get from them is : " Get used to fact that you have MS! Why do you make research on your own, stop doing it!" etc.
As far as I am concearned I am very confused and not sure how to treat my condition. Eversince from march I am on 100mg Aspirin therapy and it seems that it helps a lot. I'd say that fybromyalgia and anaemia are my biggest helath problems. But many of my symptoms improved since i changed my diet - now I eat mostly raw fruit and vegetables, drink a lot of water, no milk and dairys, no cereals, no sugar and sweets ( only in rare occasions ), nothing refined or artificial. But I wonder if I would feel even better if on warfarin or heparin.
Is there anybody here who were initialy diagnosed with MS? I was also told ( a hematologist ) that lessions on my MR are more likely to be small thrombosis than MS lessions. It's so confusing.
However, I believe that diet, exercise and pharmaceutic or natural blood thinner can make a big difference and I'm willing to share my experiences here, if anybody is interested, especially regardin diet, nutricion, and bihevioural patterns/mind patterns. Eversince I have changed the way I see myself, the world around me and other people, I feel much more relaxed and thus much better:)!
Sometime I do have pains all over my body, but now they seems to be milder and last shorter. So much I'd like to say, sorry for a long message. Hope to share experiances here:).
And not to forget, Merry Christmas and have a nice Holidays:)!
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ginger_lover
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Hi, I am sorry about the 'battle' you have obviously had....& still having.
I do hope you can find a doctor to listen to you.
I know there are others like you that have been told at first that they have MS, so hopefully they will get back to you soon.
It makes my blood boil when I hear the 'ignorance' of docs that wont listen to us or do the correct paths to find more out etc.
I have had APS for 10 years now, possible Fibro', migraines, Menieres disease & Raynauds disease, I originally got told my symptoms were down to 'modern living' & I'm depressed!!!!
I feel as I am one of the luckier ones as when I had earlier symptoms: frequent migraines, numbness, very bad joint pains, felt like a trapped nerve in my neck, pins & needles.......I questioned them, I at first got those silly answers, so I changed docs until the one I ended up with listened & put me through lots of blood tests & thanks to her she found out what was wrong with me before it did something else.
Hello there and welcome, you have been a very good detective something which I also had to be. With regards to diet, I think any condition is helped by a better diet. In this country the advice is 5 a day of something healthy, which is not enough for me, I follow an unprocessed and fresh diet, with proteins rotated, lots of fruit and salad, pulses, lentils, however living in the countryside I have more choice of fresh and free range meat and also good quality fresh fish. I notice that if I put on weight I do feel worse, so I keep an eye on this with daily exercise, which lately due to a flare up of several things, had to stop, but hoping to get started again. Mary F
Yes it would appear that many Hughes patients were originally diagnosed with MS. Prof. Hughes recently mentioned seeing more referrals with this original diagnosis.
I was being investigated for MS before finding out I had Hughes although I was not told this until 18 months later.
I hope that you can find a Doctor with a more open mind.
Sue and Mary, thank you for your answers and welcome notes:))
Yes, I am totaly frustrated with doctors who are obviously ashamed not to be able to answer on any of my questions. But instead of simply admitting that they can not help me, they get mad at me an tell me that I don't need a hematologist,a reumathologist, that I should stick to my MS neurologist and find a good psyhiatrist, since I am obvioulsy a crazy MS person - that's why I go around and ask about Hughes syndrom.
Sue, I can understand how you must have felt being constantly told that you are "just depressed", most of us went through the same - I was told so many times that I am a hipochondriac and that is nothing wrong with me, and than suddenly - "oops, you have MS!" One thing that confuses me is that APS is considered as an accqured condition, not inherited. That probably means that we did get this condition because of too many stress in our lives and that we've been exposed for too long to some of our negative taughts: worry, fears, etc. It was completelu true in my case: too many stress and too many fears. On the other hand, I think that my father suffered from the same condition I have, whatever it is. He always complained about reumayhoid pains and other things that are associated with fybromialgia.
Mary, wow, great to hear that you are taking care about nutrition and hope that it helps:)! I have had a lot of trouble in the begging of my diet, while toxins were leaving my body. But once I've got rid of them I started to feel great improvement, both physically and phsyhically. I am planning to move to countryside because I'd like to grow my own vegetables and fruits and be more on open, fresh air:). I've heard of nattokinase as a natural replacement for heparine, but I'm not sure that I would know on my own how to dose it since I don't know what level of INR I should achieve. I definitely need a good doctor, but hard to find a one here. But I'm sure I'll find about best therapy for me, this way or the other:)!
Thanks Marry:)), If you want to tease your tongue try to learn Serbian:), it's similar to Bulgarian but much more sharp vocals like rrr, ch, sh, one next to another:)! Bulgaria is beuatiful and close to Serbia, both countries still having beautiful and intact nature, I'm sure you're enjoying:)!
Yes I go several times a year. Our house is near Veliko Tarnovo, and I could not possibly learn another language, this one is near on impossible for me! Mary F x
Hi Ginger lover, so sorry that you have the d/x of APS, MS, but not getting help from doctors in your country. Living in tropical Queensland has been the same for me having had severe cardiovascular events over many years, until researching, and finding help from Hughes Syndrome forum in 2007, and being positive in tests for Lupus/and Hughes, but after several specialists the breadth of my country who didn't want to know, start of 2010, I found a new eye specialist in my city who knew APS from Dutch univerities, treating retinal and catastrophic APS, so he lasered my eyes, and referred me to London Bridge Hospital. I saw Professor Hughes mid last year who confirmed APS, sugesting plavix as medication, giving me details of a lady rheumatologist in Sydney he knows. I've flown down 3 times, but very difficult having no local help. Just onto Plavix in May this year. However I'm still having problems- re bruising, clotting and there is noone else in my city who can help not knowing APS, so I have to change my GP as she is so sceptical like others. I do hope you continue to fight to find someone to help as I have had to; there are many research papers re whether APS or MS I have researched that might help you.
Dear Mary:)), thanks for your comment! I'm actually doing very good. I was dignosed with MS with only single one symptome, and even neurologis were not sure that it was correct diagnosis, since a lot of things wasn't typical in my case. I have never had im my life any MS symptome, but did have a lot of those associated with APS and Sjogren's, which are quite enogh for me. Even optic neuritis is very common in APS.
What scares me is that if I get a ( God hopes not ) a clot, or thrombosis, or TIA, etc. it could be interpreted as MS relaps as symtoms are similar to those in MS.
I am acctualy thankful for MS diagnosis, even if it was a wrong one, since it pushed me to start thinking seriously about my complete life. I have changed so much things for the better, and I do feel much better two years after "diagnosis" than before. However, I'm a little bit scared of life threatening APS issues..Not being able to get antcoagulant treatment in my country ( since nobody wants to re-evaluate my diagnostic findings ) is forcing me to look into alternative aproach, and I belive that everything that I do ( diet, natural detox treatments, chelation from heavy metals, different herbs and spices that cleans the blood and make her "thinner", etc. ) helps me a lot:)! And an asprine a day too! I have found an internet receipt on how to ferment soy beans at home and to make my own nattokinase. It is not only good for blood clots, it also clears fibrin deposits from blood vesels and even other organs and tissues. And it has no side effects.
You've been lucky to be given opportunity to meet Professor Hughes who directed you further. I have exchanged a few emails with staff from Louise Coote department of St Thomas hospital, and they were very kind, supportive and informative. They helped me a lot:)!!
But I understand that the situation for people with APS in Australia is not much better currently. Probably many people in Australia still don't know that they have APS, that's why you don't have no one to talk to. In my country APS is usualy asociated only with miscarriages and SLE
I'd gladly read your research papers that are related to APS, you can drop me a message here, I can give you my email than, thank you so much. And if I can be of any help and support to you feel free to write me at anytime. Having no one to talk to IS very frustrating, maybe we can be the ones in our coutries who will inform people about APS/Hughes. If I had more time I'd start writing a blog about it
glad to read your post. Yes, I am so pleased to talk to other APS people as it always broadens our horizons, have been since 2007. I f you would like to give your email adress to me, I will certainly send papers back to you. I have bought all of Prof Hughes publications, and most lupus worldwide also. You are right- it's the clots thrombosis that has scared me, since the possible DVT 3 months ago- so intend seeing a visiting vascular specialist after New Year
All the Best For Christmas Joy with family and friends I am looking forward too
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