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Dry mouth, lightheadedness and numbness?

Posted , 5 users are following.

gem1971
gem1971

HI everybody, I have been suffering a set of odd symptoms for the past year. The main on is lightheadedness. I also feel a burning behind my left eye which may only last a second or so but comes and goes infrequently. However this week I have really dry throat.

My mum has Sjogrens and I'm seeking your knowledge as to whether this is hereditary and if lightheadedness has been a symptom for anybody else. I feel like I might faint but never have, I feel stuffy in my head like lifting my head is an effort. My arms chest legs and torso have a weird numb feeling about them, so does my bottom internal gum. I can feel to touch but body jist doesn't feel right, also have a week feeling throughout.

Does this sound like anything anyone has experienced with this disease? I'm keen to begin ruling things out as I can't carry on with this the way it is.

TI

LS

2 likes, 7 replies

7 Replies

  • mandy95
    mandy95 gem1971

    Posted

    Hi I65195,

    Yes it could be sjorgrens and up to 50% of patients with Sjorgrens also has Fibromyalgia (according to my RA anyway)

    Regards,

    Mandy

  • Tumtum1963
    Tumtum1963 gem1971

    Posted

    Yes I've had these symptoms as part of my Sjogrens - I'm under neurology and rheumatology and have a rather MS-like type of Sjogrens Disease. The symptoms you describe could relate to a condition called PoTS.

    However my middle son aged 21 also finds himself worrying a lot and he phoned me about swellings and lumps. He thinks he has some kind of cancer relating to the lymphatic system -although he usually calms down once he's been reassured by his GP that he's okay. I think it must be hard to have a parent with a disease like Sjogrens because not many people have even heard of it and it can be multi system for some and just dry eyes and mouth for many. I'm finding it hard to come to terms with myself let alone explain to others or my three sons. Many doctors barely know anything about Sjogrens as it's relatively rare.

    So have you spoken to a doctor about your symptoms yet? I think you should do this and explain that your mum has an autoimmune disease so they understand your concerns. Good luck and take care.

  • dee53012
    dee53012 gem1971

    Posted

    go take a look on line for something called polymyositis (PM). see if it fits. i have celiacs (CD), and think because of the lack of nutrition, it caused them PM i have. it requires a muscle biopsy to find out if you have it. they say it is rare, but i think it is underdiagnosed. like CD

     

  • aitarg35939
    aitarg35939 gem1971

    Posted

    Have you had the dizziness checked out? I'm not saying it can't be Sjogren's, but it is can be dangerous to assume that all symptoms stem from one syndrome or disease without getting them checked. There are many causes of dizziness/wooziness and some of them are easily treated; others not so much.

    Good luck

    • gem1971
      gem1971 aitarg35939

      Posted

      Hi, thanks for replying. We'll I've had a brain mri and also an ecg which all came back fine, bp is ok and ears are fine apart from unexplained ear pain. I'm at an utter loss I mean what's left? I imagine this is how life is now and it's totally changed me as a person. I juse don't seem to be able to get any further help and yet my symptoms seem to get added to or change daily. For instance today my whole body had a general light numb feeling to it, almost a weekness. My dr suspects vestibular migraines but I thought they were vertigo and mine isn't a spinning sensation, mines more like I might pass out. I feel I best just accept this is life now, but it isn't a life.

    • Tumtum1963
      Tumtum1963 gem1971

      Posted

      Look up PoTS -and also dysautonomia. Also ask your GP for a full blood count and add in inflammatory levels. Ask for autoantibodies for Lupus and Sjogrens to be run if they haven't already. Then, if all else fails, insist on seeing a neurologist and/ or a rheumatologist to exclude CNS Vasculitis, Behcets, peripheral or small fibre neuropathy, MS and Lupus or Sjogrens. Also rule out thyroid diseases.

      The thing is that these diseases can take years to diagnose or show up in nerve conduction tests or blood or brain MRI. But with a family history of autoimmunity you are more at risk and this should be acknowledged by doctors. You may have to fight but I know from bitter experience that if you don't you may not get anywhere apart from sicker. So brush yourself down and prepare for battle -remember it's your body abc no one knows it like you do.

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