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Discussion Starter · #1 · (Edited)
Hi I have a few questions and I'm looking for a bit of advice.

A few years ago I began getting tongue swelling on multiple different occasions. This would happen typically after drinking alcohol, too much caffeine. It wouldn't be paired with any other symptoms. Allergy was ruled out and GP decided it was a mystery.

about two years ago I began getting swelling in my hands and in my feet ( I began wearing rings at this time do this is when I first noticed it.) The swelling would happen when I was in the sun, when I had alcohol, and when I had caffeine. I seemed to be retaining water in my ankles and knees as well. Around this time I began getting a face rash and well as a rash across my chest. I've always has rosy cheeks but this looked more like a feverish rash. I didn't go to the doctor for this because it was more annoying than anything...

These symptoms continued along with frequent canker sores, vibration in my left temple, anxiety (no depression or joint pain whatsoever.)

I stopped drinking alcohol after I began having weird reactions and one night about two months ago my tongue feet and hands began swelling. It lasted for about a week along with a face rash. I went to my GP assuming it was an allergic reactions (I knew nothing about autoimmune). Doctor tested my entire ANA panel along with a few other tests. Everything came back normal except for my ANA was positive along with Anti DNA DS which he told me was a strong positive as well as Anti Centro mere which he said was positive. Within a week of the swelling beginning I started getting joint pain. It started out as aches and was totally manageable with aleve and turned into burning sensation in my ankles feet wrists. Around this time my wrist would lock up in the morning and I would have to force it to crack to get it to move freely. Each morning I could crack each bone in my body. I also began to get very tired. I am not a napper and I began to need 2 hour naps a day. I would get 6-8 hours a night and feel exhausted all day long. I am a personal trainer, extremely active, working all day with high energy usually. During this time I could not lift any weights as a I felt extremely weak and I had to take off work. Also during this time I developed a UTI (test results showed creatine was a bit high as well)

After seeing my GP He told me that he assumed it was not an allergy but to see an allergist just to rule that out. I saw the allergist. No allergy that he could find. He repeated the same tests as my GP as well as few others. My tests came back the same with my ANTI DNA Ds being a tad bit higher the second time.

Both doctors referred me to to the rheumatologist. It took me about a month to get in. I did a bit of research during this time and decided to cut out caffeine, dairy, and gluten and to continue with no alcohol. My symptoms have improved but are not absent by any means, especially the fatigue. I have been able to get back into working out a working regularly.

I met with a Nurse Practitioner for about an hour before the doctor came in. We reviewed all my symptoms although I felt like I was answering a lot of questions rather than telling her exactly what was going on with me; therefore a few symptoms were skipped over. I figured when the dr came in he would review and I would be able to fill in the blanks that were missed. This was not the case. The doctor was extremely condescending and asked me "Was the angioedema diagnosis not remarkable for you?" (allergist diagnosed me with angioedema and said it was probably a symptom of something more.) I was taken back by this and became overwhelmed and began to cry. Without asking my symptoms he said "I've reviewed your blood work from quest and labcorp and I believe the tests are false positives. I don't believe you have any autoimmune issues I'm going to defer you back to the allergist." He told me that my symptoms were due to heat and that's what the swelling was from. He told me that his hospitals diagnostics would prove that these are false positives. He ordered x rays on my hands and feet (what??) and more blood work (will be returned this week coming up). He said "this is for sure not lupus you have no symptoms for autoimmune that I can see." Explaining to him that on this day I felt relatively healthy and this was not the case all the time. He mentioned that my symptoms may also be due to underlying anxiety and depression. At this moment I felt extremely angry and continued to cry. I feel anxious due to my body feeling unhealthy and I feel depressed because I've had to rearrange my schedule to fit in naps and try to manage these symptoms not because I have an underlying mental illness.

I was always very sick as a child and grew to be a healthy adult. I had strep throat 4-6x a year until I was about 12 years old. I also got mono when I was 13 years old.

My symptoms include
-left temporal artery vibration
-swollen hands feet tongue. Sometimes traveling up into calves and knees/ wrists.
-sand papery rash on face with redness on ears and face
-feverish feeling
-anxiety
-hair thinning around hairline
-rash on upper arms
-retaining water
-lower back pain
- joint burning/clicking/aches/stinging (on occasion in ankles and wrists)
-wrists locking up.
-fatigue (to me feels extreme because of normal high energy levels).
-canker sores.


Would love some feedback?
Does anyone else deal with narcissistic dr's?
What do you suppose I do next.
 

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Hi Haleigh,

It seems strange for the doctor to say the tests were a false positive when on 2 different occasions the results were positive. Maybe a second opinion is needed here. Others on the site have had to go to several doctors to finally get answers.

Take care,
Lazylegs
 

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I find it odd that he wouldn't listen to you or accept the blood results. Often doctors want to do there own bloods so I wonder what will happen when his own reults are the same? Will he contact you? Will that make him be prepared to treat you?

Otherwise I agree with Lazylegs a second opinion may be in order.
 

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Discussion Starter · #4 ·
I was honestly extremely confused. I've never been treated like this by a doctor before.
This hospital is very prestigious and I saw reviews before hand about poor bedside manner.

He did say they would call with my results.
He also snapped at the nurse while I was in there while he checked my lymph nodes and said "guess you skipped over the part where she has shotty nodes."
Which he never explained to me.
I totally agree a doctor should be thorough and retest.


The only thing I could think was that the nurse didn't understand my symptoms or I was unclear and when she reported it to the doctor outside of the room he took it as me wasting his time.
 

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Ummmm...disgraceful, you def need a different Rheumatologist, how can you work with somebody with that attitude ?

Can you get a second opinion...positive Anti -DsDNA is pretty positive for autoimmune alongside the increased ANA result. Do your homework and find somebody with good autoimmune experience...even if you have to travel to find one; it is important that things are ruled in or out professionally... not on anybody's whims for that day.

Could he have said 'sweaty nodes' ? That is often the armpits when poor patients are nervous and scared...if that is the case he deserves no more of your time or consideration !

Glad you have found us...keep looking for answers, you are the only advocate your health has ...............Take care, Claire
 
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