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Autoimmune Diseases For Hashimotoís thyroiditis (underactive thyroid), Gravesí disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.]

Group newbie

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Old 05-28-2019, 07:54 PM   #1
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Join Date: May 2019
Posts: 1
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Hi everyone!
Iím new to the group and looking forward to getting to know everyone and learn as much as I can.
My history:
Iím 43 currently, In October 2017 I became very ill. My heart was skipping every 4th beat, pb 193/98 h/r 200+ I was struggling and honestly thought I was dying. Hubby made me see a doctor who basically said I had anxiety go home and rest.
I knew it wasnít anxiety that there was something majorly wrong and went back to the doctors 2 days later and demanded testing.
Now I had been very stupid and ignored my lupus diagnosis in 2004 after several miscarriages and the birth of my second living baby. So I knew it was something related.
I demanded an echocardiogram, halter monitor, full lupus panel, etc.
I received a call from the doctor telling me my results were in and I had an appointment with an immunologist that afternoon.
Head to the immunologist where she diagnosed me with SLE and ordered lung function, skin and muscle biopsy, thyroid panel, put me on bed rest with a beta blocker and started on 4000mg Mycophenolate. With an appointment for the following week to come back.
Again I received a phone call this time from the specialist telling me I was also thyrotoxic and she had sent a script for carbimazole to my local pharmacist and I was to start ASAP 3 times a day.
The following appointment I was also diagnosed with a rare form of Vasculitis called Systemic Lymphocytic Vasculitis and sent to an endocrinologist to further test my thyroid. Scans showed I had multiple nodules that were causing me to be Thyrotoxicosis. 2 biopsies later I was also diagnosed with neoplasm. Unfortunately due to my other issues it was too dangerous for me to have surgery and I had high dose Radioactive Iodine treatment in September 2018 and spent 14 days in isolation. My recent scan shows my nodules have grown but Iím no longer toxic. Iím happy to just sit and watch without treating the cancer for now.
I returned to work after 18 months sick leave on April 1 this year but I went down hill and Iím now back off work and looking like I will never be able to return to work.
I see an amazing immunologist but every time I go to see him he adds more active medical concerns, the latest is fibromyalgia, lupus nephritis, anemia, b12 defiency and vitamin d defiency Itís a never ending battle but one which I will not let ruin my life, and although Iím currently battling to get through a normal day I know that wonít last forever.
Iím hoping being a part of this group will teach me any tips to ease my issues and just generally chatting to people who know exactly what you are going through.
Thanks for reading!
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Old 05-29-2019, 03:09 PM   #2
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Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 2,598
My Mood: Group newbie

Hi Kooze

Welcome to NeuroTalk; I hope that you will find the community helpful and supportive .

I am sorry to read about your health problems but it is good that you have an immunologist who can work with you effectively.

With care.
Knowledge is power.
kiwi33 is online now   Reply With Quote

appointment, diagnosed, immunologist, iím, lupus

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