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Hi, I'm new at this so forgive me. Hopefully I am starting off correctly. Let's start with I have Lupus and ITP (platelet disorder) and a host of a lot other health issues and I get frustrated at times when doctors want to dismiss me.

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9 Replies

  • Posted

    Hi chubroc


    What are you other disorders...are you under a rheumatologist for lupus??

    • Posted

      I also have trigeminal neuralgia in my mouth, baxters nerve damage in my foot and I have a situation with extreme dry my that all my doctors dismiss bc they don't know how to get to the root of why my mouth is so dry. The all give me the reason we'll you know you have lupus and/or one of your medications could be the cause. But no one has yet to show sincere concern about how I'm feeling

    • Posted

      Cellcept for my eyes

      Plaquenil for lupus

      Nexium for acid reflux, gas, bloating

      Cozaar for high blood pressure

      Lyrica for trigeminal neuralgia

      Rituxan infusion for ITP (platelet disorder)

      Zovirax to prevent shingles

      Looks like a cocktail I know.

    • Posted

      Hi chubroc

      Have you read the leaflets that come with your may be a possibly that taking one or more of these meds can cause dry mouth....check.the leaflets and see if dry mouth is a side effect....all these.meds together could be causing your dry wishes...

    • Posted

      Hi chubroc

      Having a dry mouth is a condition called can be treated with a med called Salagen which boosts saliva production...also you can get over the counter salva substitutes.....

    • Posted

      Sorry! spellcheck...'saliva' not 'salva'

  • Posted

    Ideas jumping to mind:

    - Rheumatology: Sjogrens Syndrome? (blood antibody search, lip biopsy)

    - Dysautonomia specialist to make sure no ganglionopathy (AAG- extremely rare) 

    Try some mouth moisturer for dry mouth symptom relief.

    Do you have neuropathic pain medication trialed?

    Have you been referred to a pain specialist (who does know that treatment)?

    Hang in there and you need to push sometimes.

    We have had horrid 1.5 years and if I relied on our physician, we would not get any further, yet he is mostly happy to refer on especially since nothing bounced back to normal by itself as every doc though it would 'just be a post viral hicup'.

    You need often another pair of eyes, fresh start and sometimes that is very disappointing and you need to have a new fresh start again. I find that awful as time is passing in the meantime, time wasted, but there is no time to cry over spilt milk, we need solutions, hence please keep on asking for another referral to a specialist, be it an immunologist, rheumatologist, pain specialist....ask them, if their tests come back negative or treatment trials after months unsuccessful, what to do next, which ideas they have to consult.

    We also did see psychologist, did breathing exercises and the likes. These helped maybe with dealing with pain a tiny bit and not go completely insane, but the root cause is not psychological, it's a side effect of being chronically ill.

    It is exhausting, it is frustrating, but we need to battle on! 

    Sometimes symptoms are connected, sometimes they are not.

    My fav saying: 'people can have as many diseases as they like'.

    So don't get everything put into one and the same quick draw.

    We had at least 6 very dismissive docs! After 1.5 years at a cardiology check up, a fill in was there and had a glorious idea to refer to a team with loads of specialists at once, presented at once, they talking together, which blank spaces still existed. Why was that not ordered earlier?

    One wonders, but you do get very dismissive approaches and sometimes tests done, that are from the beginning for sure not revealing anything (like our 3rd pelvic ultrasound instead of an MRI, just because of being cheaper) to be able to write 'further imaging', and actually, nope, just repeat imaging of a prior normal imaging, to be able to make your case look as normal as can be.

    I have to calm myself down to be not couterproductive, but I can understand your frustration.

    Yet we need solutions and we only get there, if we hang in there, do our homework, and battle on, asking for... another referal. Ask around in your area maybe via other social media, where someone with similar symptoms got helped. Sometimes those recommondations are helpful, sometimes you wonder why they were recommondated..... but if not tried, we wouldn't know.

    Very energy draining, very financially draining, but I am so sure there are answers or solutions, that are simply not found yet and we don't want to miss them.

    Best of luck!


    • Posted

      I understand but I'm not one to quit on anything definitely not me. I will look into the things you mentioned. I've been tested 3 times for sjogrem syndrome. I can see any specialist I want bc of my insurance and I do. Fresh eyes is so true. Even tho it gets frustrating I'll always keep pushing. Thank you and stay blessed.

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