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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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bless ur heart!!!!!!!! dang, u been thru it! don't even know where to start to respond, other than empathize and wish u luck. SOOOO hard to get proper dx and treatment 4 autoimmune diseases! new rheumatologist just saw had to have labs to confirm my lupus ive had 4 yrs, as well as been treated for. and all u have 2 do is LOOK at my hands, etc, to believe me when I tell u ive already been tested and dx with it. (VERY disabled, as my lupus is difficult to control.) so, I feel ya. again, good luck!
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7 Reactionsand they kept telling mommy, they were surprised she wasn't dead yet. (very severe and often life threatening case of it.)
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4 ReactionsHello @samflow, Welcome to Connect. Venting is OK. I would think with all you have been through trying to figure out what is going on after seeing many different doctors would make any of us want to vent. Not sure if you are aware of the Sjogren's Foundation but they have a lot of information and resources that might help you learn a little more about the condition - https://sjogrens.org/understanding-sjogrens.
You might want to scan through the discussions and comments for the two conditions you mentioned to see if others have shared similar symptoms or suggestions that might help. Here are links to the search results:
-- "Sjogren's" - https://connect.mayoclinic.org/search/discussions/?search=sjogren%27s
-- "Lupus SLE" - https://connect.mayoclinic.org/search/discussions/?search=Lupus%20SLE
I know you have seen a lot of different doctors and specialists but have you considered seeking help at a teaching hospital or major health facility like Mayo Clinic where they practice patient centered healthcare?
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7 ReactionsHi,
Interesting that you are finding veggies a problem, I thought I was the only one with that problem. I have been having problems with reactions to some veggies while others I have to restrict the amount I consume and it is getting worse. My list of consumables is getting shorter by the month leaving me eating what is not supposed to be good for me, but keeps me alive!
I'm three years into being dead and have to say I haven't noticed the difference! The important fact to remember is that medicine is not an exact science, there are a lot of assumptions and quess work involved.
I endured the roller coaster ride for 13 years and can now sit back and get on with what is left of life for me, now we know what diseases I actually have. It can be pretty rough constantly being told it is this disease or that disease and ultimately it's in your head, we can't find anything wrong. Life turned around when one bright spark in ED recognised the symptoms and made the diagnosis. Hasn't changed the symptoms and it is incurable but at least I'm not fussing over what it might or might not be. It bought a certain amount of calmness to my life, I know my fate, death, no different to anyone else alive, we all do it, just some sooner than others. Besides I'm theoretically dead anyway!
We each have to fight for an answer as in general with the health sector it is sadly a case of out of sight out of mind. I was never one to push so hard instead committing to what the H--- and getting on with my life. Looking back on my medical records this all started 27 years ago and went unnoticed despite it being recorded. I'm more vocal about my health now and find making myself aware of my conditions helps me extract the medical help I believe I should get. I get to discuss my health on my specialists terms which they seem to respond better to, as I understand the mumbo jumbo they are talking.
Keep pushing for answers, you are your best advocate.
Cheers
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10 ReactionsThank-you, pamper, for your kind reply! Gnashing my teeth while reading about the trials you've been through for your autoimmune diseases! So thankful that we're still here in spite of what the docs have said. I feel you, too and wish the days ahead will be kinder for you and everyone here.
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3 ReactionsHi John! Many thanks for your response and helpful suggestions.
I'll def be looking into the links you kindly provided here.
There are so many people on this site that are dealing with incredible health challenges ("challenges" may be putting it too mildly) and I'm touched by all those reaching out, like yourself, with kindness and help.
Thank-you, John. A virtual hug sent to you all.
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5 ReactionsHi Cheyne! I love that you are three years in to "being dead" and "haven't noticed the difference!) You cracked me up with that and I'm really thankful to you for sharing your great sense of humor.
What an incredible trip you have been on. All these years that you've been among the "walking dead" and yet you have more spunk than many who are "living" in spite of all you've been through.
Thank-you for taking the time to reply, Cheyne. You made my day.
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4 Reactions@samflower You mention diarrhea and how it rules everything. That was me about 2 years ago. I suddenly started with diarrhea out of nowhere. My doctor gave me a referral to gastroenterology for a colonoscopy. I hate those things. On top of that, the doctor was rude! Anyway, he said that i have EPI—exocrine pancreatic insufficiency. I was not making enough pancreatic enzymes so wasn’t digesting foods. Started me on Creon which replaces the pancreatic enzymes. I’m much better now, thank heavens! Sure hope you get taken care of soon!
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4 ReactionsHi,
You are more than welcome.
I learnt some time ago it is better for me to treat my health problems lightly despite them being serious, as the alternative is to sit and stew over them. The best part of being a living dead person is the times I get to remind my former Dr I'm still here dead and kicking, she seems to have this permanent red sun tan to the face when we meet!
I was devastated to find out I was only mortal! I went home and closed my business then and there, made my will, settle my debts and sat and waited. I got tired of that and started to do my own research discovering it is only a death sentence if I die.
I learnt when I had a cancer scare my way of thinking is, so what, just manage what I can't change as best I can. Life is not only for the living, it is also for us living dead people of which I'm sure there are a few more out there.
Someone said to me recently tomorrow never comes, tomorrow is always tomorrow because when it becomes today, tomorrow is still tomorrow, yet to come. I guess that is why I only deal with today as tomorrow is when apparently going to be dead!
Cheers
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4 ReactionsHi Becky! Great to hear from you, thank-you. How wonderful that you received an accurate diagnosis from your GI doc and that Creon has given you much needed relief. I'll be asking my doc about Creon and the otc digestive enzymes I've tried only made things worse.
Wow, really sorry you had to go through the dreaded colonoscopy procedure and that you had a rude doctor. Trying to get help is really frustrating most of the time without the additional stress of someone being rude to you. Thank-you for reaching our, Becky. I really appreciate it and your letting me know about Creon. All the best to you 🙂
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