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Pulmonologist says I should be dead by now
This will probably feel familiar to many here when I say the path to getting a diagnosis has been a roller coaster.
I was diagnosed with Sjogren's two years ago. My ENT and Rheumatologist agreed I have Sjogren's in spite of mainly neg. lab results including a lip biopsy.
Wanting second and third opinions, I followed up with two doctors who are specialists in autoimmune diseases. They did further testing and reported that they see "a little" Sjogren's but mainly Lupus SLE and that I also ought to see a cancer specialist soon because my labs indicate that I most likely have cancer. These two doctors said I needed an immediate infusion of Methylprednisolone (Solu-Medrol) because of the Lupus. I returned the following day for a second infusion. Those two treatments really knocked me for a loop. Lots of hair loss and nausea on top of how awful my health already was.
Rheumatologist referred me to a gastroenterologist for chronic diarrhea and nausea. PPI prescribed for short~term use. Still having diarrhea two years later.
I know a kind ortho surgeon who did some simple muscle testing as it was getting very hard for me to walk unaided. He was surprised at how little strength my arms and legs had and he felt that Sjogren's was a correct diagnosis without having to do any blood work. He has many patients who have Sjogren's and my symptoms looked very familiar to him.
Next up was an allergist who determined that this vegetarian gal is now allergic/sensitive to most of the veggies I eat. Changed my diet but that didn't help the GI issues.
Saw a pulmonologist this week (the eighth, I believe, doctor) for shortness of breath and possible uti. Without doing any lab work, he said that there is no way I have Sjogren's and Lupus because I would have been dead if I had not had any treatment for two years! This goes against everything I have been researching on my own for the past two years. He did do lab work and a chest x-ray that were "normal." His feeling is that all the indicators on my blood work would have to be nearly 80-100 percent positive in order to make a diagnosis of those diseases. I did tell him that approx. 30-40% of people do have negative test results but that didn't impress him. He prescribed an antibiotic for a uti and that was it. The next step, he feels, should be to see a gastro doc.
This really feels so crazy. I have sooooo many symptoms of Sjogren's that I really can't get why the pulmonologist would be so adamant that I can't have Sjogren's because I've been untreated for two years and therefore should be dead by now.
There is no moment when my muscles are not hurting. If I sleep all night, which is rare, I wake up feeling like I've had no sleep at all. Diarrhea, nausea, dry mucous membranes. nerves randomly shooting pain through all limbs, low energy, etc.
I'm at a loss. Feeling like I know more about what is going on with my body mainly because I have read loads of stories online in groups like this from people who have been in the same kind of hamster wheel of trying to get a diagnosis and treatment.
Haven't come across anything that says I ought to be dead by now because I haven't been taking meds. Has anyone here heard that?
Very thankful for a place to vent. This is my first time reaching out like this. Thank-you!!
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Hi Cheyne! You are so delightful and I was doubly happy to see your second reply as it gave me even more smiles. Thank-you soooo much! I love the image of your Dr. having a "permanent red sun tan to the face" when they see you are "still here dead and kicking"! You're the funniest dead person I've ever met. Thanks for writing and, most of all, for being a blast of joy in a stressful time. All the best to you.
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2 ReactionsHi,
I'm slowly gaining back a life after dumping most of my meds. I seem to have become reactive to most medications these days. Stopped my insulin about a month ago and confirmed it was causing me to sit around unable and unwilling to do anything much less care too much about anything. Sure my glucose levels dropped but so did my will power. Dr's didn't believe me so this was the second and final time I have stopped it. If I wasn't dead I'd swear I'm 39 again! I wake up in the morning crippled and ill but ready and willing to work. My BP is sky high, glucose levels are constantly high and I'm high on life. Seems to me that work might be just the medication I need. Do I enjoy the comfort for a shorter life, or do I medicate, feel like crap and last longer. Then of course my Dysautonomia could chime in and stop it all in an instant or I might just die naturally despite it all, tomorrow. Ahh that's right, tomorrow never comes, so I guess I'm kind of stuffed. Logically then I would have to die today but I'm to late because it is now midnight and I'm becoming part of yesterday today or am I part of today tomorrow. Whatever it is it will be some time. No wonder I get migraines!
Cheers
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4 Reactions@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
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5 ReactionsHi 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!
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3 ReactionsHi Cheyne,
I really get what you mean about being "high on life." At times it seems strange to be "high on life" when we're technically "dead!" My pulmonologist was quite upset that I wasn't dead yet. He was so certain that I ought to be six feet under, that he all but pounded his fist on his desk in frustration.
Your choice to "dump most of my meds" is exactly where I have been for nearly two years. Like your situation, most of my meds made me worse.
Glad you are still here, among the "living dead" and finding a way to be high on life!
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1 ReactionHi,
Through all my health problems never once have I wonder why it is me that has to go through all this. I do wonder why I'm still alive and fighting the untreatable and incurable. I can't say it is the zest for life that keeps me going, more likely I'm proving the theory that only the good die young! It may be inherited as my mother lasted 6 years after being allocated a month to live. Then again it could be as simple as my brain doesn't have enough grey cells left to know when to quit. At the end of the day I consider myself lucky that I'm able to push through the pain barrier each day, ignore this crippling disease with all it's symptoms attacking me and survive on essentially bread and water. I'm told by the experts I'm physically stronger and have better mobility than is normal for my age, there I was thinking I was into early muscle depletion and suffering from compromised everything. Amazing what the body can do in the face of adversity with a lot of determination and healthy dose of bloody mindedness. Surely a case of mind over matter.
Finally figured out, I must be the living dead at midnight, neither yesterday, today or tomorrow, but a part of me in each zone. Yeah, I know the grey cells are running a muck, but at least they still can run!
Take care.
Cheers
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5 Reactions