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-   -   Group newbie (https://www.neurotalk.org/autoimmune-diseases/253697-newbie.html)

Kooze 05-28-2019 07:54 PM

Group newbie
 
Hi everyone!
I知 new to the group and looking forward to getting to know everyone and learn as much as I can.
My history:
I知 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 wasn稚 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 I知 no longer toxic. I知 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 I知 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 It痴 a never ending battle but one which I will not let ruin my life, and although I知 currently battling to get through a normal day I know that won稚 last forever.
I知 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!

kiwi33 05-29-2019 03:09 PM

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.


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