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Pulmonologist says I should be dead by now
Autoimmune Diseases | Last Active: 1 day ago | Replies (16)Comment receiving replies
@samflower
I’m sorry you are dealing with this and I feel for you.
If it was me, I would fire all of the doctors who dismiss my symptoms/suffering or diagnose without testing/validation.
What type of cancer were you told you had? How did they determine you had cancer? Why would they scare you and not offer referrals/treatment?
You may want to see a hematologist/oncologist to review all symptoms and lab work done so far. It may be good to look closer at your thyroid and organ function plus do a neuropathy panel.
Have you seen a neurologist to review your symptoms and test for small fiber neuropathy (skin punch biopsy of thigh/ankle)? Have you had a MRI of your brain/spine?
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Replies to "@samflower I’m sorry you are dealing with this and I feel for you. If it was..."
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Hi dlydailyhope and thanks very much for writing!
I have not returned to any of the doctors I saw in the beginning. The two autoimmune specialists said my blood work results showed I most likely have cancer. At the time, two years ago, I recalled reading that for some, Sjogren's blood work can show positive for uterine or breast cancer but that that is actually a confirmation of Sjogren's rather than cancer. They really weren't interested in this possibility and hadn't heard of it, either. They were totally certain I have cancer of some kind. The rheumatologist and pulmonologist both checked my lab results and said that I don't have cancer. So confusing and frustrating!
After a year of getting nowhere with doctors, I just quit all the testing and craziness of conflicting "diagnosis."
Based on your insights and recommendations, I'll be looking for a hematologist/oncologist and a neurologist for further testing. None of the doctors I've seen so far have recommended that I see any of those specialists.
Thank-you very much for your help, dlydailyhope!