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Going from bad to worse

Hi everyone, not been on for a while but really need to ‘off load’. My life seems to be taking a real nose dive at the moment and I feel really miserable. I had a relapse around Xmas which was rubbish but I don’t seem to have picked up since then, one or two days feeling like things are improving but then go downhill again. The last couple of days the pain in my left leg and foot is agony, feel dizzy most of the time and very low, could cry at anything. Can’t get out of the house due to my leg and dizzy feeling. Anyway went to see my MS nurse last week to ask if I could have steriods, she said that without a current MRI they are unable to give steriods, she then called in the consultant who reviewed my file and ordered a full MRI and evoked eye test and an enormous amount of blood work as he thinks I may also have Hughes syndrome (thick blood), so now have to wait for all these test to be done. On top of all this I now have to attend an assessment for Incapacity benefit after filling in the rubbish form. And I am also extremelly worried about my daughter who has just found out that her 4th pregnancy has failed at 7 weeks due to Hughes syndrome so she is now waiting to see if she will miscarry naturally or if she has to have her 2nd D&C. Sorry to moan but life is s*** and I feel like I can’t cope with all this at the same time.

Thanks for listening

Sue

Aaaaah, Sue… I do feel for you. I was diagnosed on Wednesday with Hughes Syndrome as well as also having MS. It is scary having yet another possible diagnosis thrown at you.

Can I ask why the Drs think you may have it? I can understand with your daughter having recurrent miscarriages there being a link there but it isn’t necessarily hereditary; that is just because she has it doesn’t mean you do.
Have you had a history of miscarriage yourself or severe migraines?

Hughes Syndrome (or Antiphospholipid Syndrome as it is also known) was suspected in my case because I developed multiple bilateral pulmonary embolisms last year for absolutely no reason and coupled with my earlier history of recurrent miscarriages and hemiplegic migraine it seemed a likely cause. I had the blood tests and I saw the haematologist on Wednesday and got the formal diagnosis then. For me it was actually a relief because now I can get on the right treatment and stop having to argue with my GP about which meds I should be on.

Because of the PE’s I was on Warfarin but I had been on Heparin initially and also when I had to stop the warfarin for surgery and I found when I was on Heparin I felt fantastic. Even my mobility improved! The haematologist confirmed what I was suspecting, that heparin works really well in APS and I am now on that permanently rather than the Warfrain. It does mean 2 injections each day but hey! so what? Luckily I am on oral meds for the MS or I would be doing 3 injections all up. But not every body with Hughes needs to be on heparin; it depends on your symptoms and the severity of the disease. I have to be on either Warfain or heparin because of the PE’s as they are life threatening and I can’t risk them returning.

Don’t panic about the possibility of having Hughes or APS. I find that getting the correct diagnosis for things is usually more than half the battle as then at least you can start getting the proper treatment.

Is your daughter on Heparin during her pregnancies? It is usually recommended to help prevent miscarriage and is totally safe.

Have a look here on the Hughes Support Group for more information and some answers to questions that I am sure will be rattling your brain.

And feel free to PM me about anything. I am on a pretty steep learning curve myself at the moment but if I can help you out I’d be happy to…

All the best,

B xx

Hi Sue, I’ve got no advice to add I’m afraid but just wanted to say hello and say I’m sending you positive thoughts and a virtual hug ((((((((()))))))))) That is an enormous amount of incoming for anyone to cope with so I’m not surprised you feel like you are at the end of your rope. Take care and be gentle with yourself. Hope your daughter gets the treatment to help her carry to term in the future. Max xx