Hello from England

I was diagnosed with Sjogrens secondary to Scleroderma 2 years ago ... I also have Raynauds, underactive thyroid, Lichen Sclerosus, Lichen Planus, Chronic Fatique, Migraines, auto immune hearing loss and recently been diagnosed with PAH xx I use various mouth sprays and eye drops plus flouride toothpaste - not that any of them do much good.. I usually drink loads of water about 1.5 to 2 litres per day xx

8 Replies

  • Hi with those symptoms have you ever been tested for APS too? You may know that Migraines are one or the symptoms as is raynaulds and hearing loss has also been associated as a symptom - and it runs along side Sjogrens and thyroid antibodies. I don't know what PAH is ?

    There is a Hughes (APS) group you can join on Healthunlocked which can give you loads of info on this condition via their charity HSF.

  • PAH is Pulmonary Arterial Hypertension -

  • Hello again, I have just been doing some research into hughes syndrome... I have a few of those symptoms - my migraines are associated with visual disturbance and zigzags etc etc - sometimes finding it hard to walk and others - Although these can also be related to the other auto immune conditions I have I will definately think about having a blood test for Hughes Syndrome - thankyou

  • I do not want to scare you or even suggest that you do have Hughes but would hate to think that you were walking around with something like APS and not know it. Without any Thrombotic events then the treatment would probably be aspirin so its not too bad. Better to be on that then have an event and have to face anticoagulants like warfarin!!

    My daughter was recently tested because she had many of the symptoms but she did not have it so it does not always mean that you do. Still better to know though one way or another.

    The tests are very cheap so your doctor will not mind doing them.

    Let me know how you get on.

  • all the symptoms you are experiencing are also symptoms of Sjogrens Peripheral Neuropathy you should get a referral to a Neurologists, with the PAH

    are you finding it hard to breath as if you have a brick on your chest because SS peripheral neuropathy paralysis's the breathing muscles.

  • Hi Beverly, It is funny but whatever we have all our symptoms are very similar - I will talk to my Rheumatologists at my next appointment in January ... As with the PAH - the thing is I don't really get out of breath or find it hard to breath ... I ride about 3 times a week but do find that I cannot keep trot up for as long as I used too and find walking on my legs like lead sometimes ....

  • there is a machine that you can get from the chemist called the circulation booster i find this helps with my legs

  • with these symptoms you have a serious vitamin and mineral deficiency, first of all have your vitamin B12 levels checked, you need zinc picolinate tablets 200mg a day, you need Tumeric 300mg capsules 6 to 8 caps a day for inflammation, a good probiotic powder and Grapeseed 1000mg a day, and a multi mineral capsule, and let me know how you go.

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