hi i am just waitng for official diagnosis but have been told i have it

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Hi i was recently diagnosed with lupus raynauds sjorgens and gastropresis, i have fainting dizziness extreme hot and cold, trenors in hands, palpatations, chest pain and nausea x

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  • Posted

    Hi Debbie. Firstly I'm very sorry to learn that you have this lot. I have a similar combination - although mine leans more to Sjogren's with CREST plus small fibre neuropathy (Sjogrens) presumed autonomic dysfunction (Sjogrens). I was originally diagnosed with RA but no sign of this anymore. I'm also hypothyroid. 

    What meds are you on for all this? I've been on Mycophenolate Mofetil for 3 months now - having tried and had allergic reactions to four others. I am presently struggling most with GI problems and possible early stage kidney involvement. 

    You may find the Lupus UK HealthUnlocked community very helpful. Posts and comments can be locked to the community only so won't appear online and you can edit them at any point after posting. The charities that subscribe to them also often have helpful advice from admins as well as members, phone helplines plus very informative discussions and pages about all these conditions/ diseases. 

     

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    • Posted

      Ps I'm officially diagnosed with Sjogrens (lip biopsy 100% positive) but told I have the others too and soon to be tested for CREST. 

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    • Posted

      Did you say you had a lip biopsy that was 100% positive? That's very interesting.  Do you live in the U.S?

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  • Posted

    I am sorry for your DX Deb, I hope you can find answers and help.I haven't been diagnosed yet, VA keeps sending me to cardiologists because they don't work with Mayo clinic anymore, they made the first suggestion of Autonomic Nervous Dysfunction due to traumatic brain injury. VA put in a pace maker to keep heart rate up but it didn't help. I have had 4 angiograms (all clean), the last cardiologist said it was time to go back to the Autonomic System. I see the VA doctor again to try and get referral to Mayo. My first blackout while driving was 2000 and I have been searching for answers every since.

    God bless you Deb and I hope you find relief.

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    • Posted

      Good morning Deb, after after scyncoatic episodes while driving and numerous falls, I am hopeful for the first time in yrs. Since the first scyncopatic epsode in 2000 I have had 6 different Cardiologist work ups, numerous BP changes, pacemaker installed and 4 Angiograms along with uncountable EKG's, one showing heart attack. The las Cardiologist just sent my last repo0rt and said my heart is fine and I need to follow up with Neurologist for Dysautonomia. That is what Mayo Clinic DX's in 2012 but VA has their own ideas. Mayo Clinic/Hospital is the only place in the Phoenix, AZ are that works with Autonomics and II see my PC on Fridat so hoping for referral back to Mayo.

      I am hopeing you will find answers soon and send blessings and best wishes, Ken

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  • Posted

    Are you in the US? Vanderbilt in Nashville is a premier autonomic center. I have a team at Indiana University in Indianapolis. It includes my Rheumy, Derm, Pulmonologist, Cardiologist, Endocrine and Neurology. Whew eek  The good news is that they all work together so I have less of the bouncing back and forth between doctors and specialties. Sounds like you may benefit from a coordinated approach. The process is never as quick or easy as we would like but I finally feel that I am in the right place with my care team. Good luck.

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  • Posted

    Wow, that is a lot of things to be dxed with at once, I am awaiting test results for sjogren's and lupus myself.  I had an aunt who had sjogren's (she's gone now), 

    i understand the disease can be inherited, and it can involve many different organ

    systems, such as the lungs.  I have moderated pulmonary disfunction already, but

    I don't know if I have sjogren's yet.  I also have dxed essential tremor, but was told

    I don't have Parkinson's, that's a relief.  What are they doing for you in the way of

    treatment?

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  • Posted

    I already had blood drawn for tests at a major hospital in NYC, I didn't like leaving my

    comfort zone in neighboring NJ, but I had not choice, the physician I saw is one of the

    best at Mt. Sinai.  Because of the possible escalation and early demise associated 

    with Sjogrens/pulmonary involvement I decided to go the best physician I could find

    that would see me fairly soon,  I only had to wait a month.  Do your hands ever turn

    yello/white with exposure to warm/hot water?

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    • Posted

      Try to stay calm. I have Sjogrens and Lupus overlap. Have been on O2 at night for years with no worsening. Just use it when I sleep. I have Raynauds so my hands react to cold but I will watch when using warm water to see if I notice anything. I think you made a wise chaoice getting the best doc. Most physicians have no idea how to deal with these diseases. Let us know what you find out and I will answer any questions I can.
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