My Symptoms and Diagnosis - Cliffnotes Version
I was diagnosed with lupus in July 2017 when I was 27 years old.
In the beginning, my joints were hurting but I just thought it was part of getting old and I sort of shrugged it off. Maybe I slept on my side wrong. Maybe I just needed to stretch. I kept thinking of excuses and thought I'm just out of shape. But soon the joint pain got unbearable. I couldn' open doorknobs. I couldn't do my makeup. I couldn't even write my name. Walking down the stairs was a struggle. At one point I was going out for lunch and an elderly couple just bypassed me. That's how slow I had to walk.
I soon made an appt with my PCP. I described my pain and she ran some blood work. Everything came back normal and she told me to stretch and excersise more. If the pain got worse take some Tylenol. I was a little frustrated but didn't know what else to do and left.
A few weeks later I wasn't able to lie down and sleep properly without feeling a super sharp pain in my chest. I no longer was able to walk a block without gasping for air. My legs and feet then became so swollen that my ankles dissappeared.
I went back to my pcp and demanded she run tests because this was not normal. Soon I was seeing a nephrologists, hematologist, rheumatologist and getting ultrasounds, MRIs CT scans, xrays. Because I was so adamant on getting more tests and finding out what was wrong, my PCP made sure I got to see these doctors and complete these tests ASAP. Without her help I would have waited weeks or months.
After all that it was finally determined it was lupus. In the beginning I was sort of in denial and saw 2 more rheumatologists until reality finally began to sink in. Lupus has affected my heart, lungs and my kidneys. It has also affected my weight, my hair, skin and diet.
It has now been almost 3.5 years and the next chapter of my lupus journey is about to start. I am now 31 and engaged so starting a family is on my mind. But before that happens I need to get into remission.
Even though I was suffering with symptoms for months, I think my diagnosis was rather quick. I want to say after my second PCP visit it took about a month to get a diagnosis. I've heard so many horror stories of misdiagnosis and waiting years to finally find out. So, I def think I was one of the lucky ones.
A few weeks later I wasn't able to lie down and sleep properly without feeling a super sharp pain in my chest. I no longer was able to walk a block without gasping for air. My legs and feet then became so swollen that my ankles dissappeared.
I went back to my pcp and demanded she run tests because this was not normal. Soon I was seeing a nephrologists, hematologist, rheumatologist and getting ultrasounds, MRIs CT scans, xrays. Because I was so adamant on getting more tests and finding out what was wrong, my PCP made sure I got to see these doctors and complete these tests ASAP. Without her help I would have waited weeks or months.
After all that it was finally determined it was lupus. In the beginning I was sort of in denial and saw 2 more rheumatologists until reality finally began to sink in. Lupus has affected my heart, lungs and my kidneys. It has also affected my weight, my hair, skin and diet.
It has now been almost 3.5 years and the next chapter of my lupus journey is about to start. I am now 31 and engaged so starting a family is on my mind. But before that happens I need to get into remission.
Even though I was suffering with symptoms for months, I think my diagnosis was rather quick. I want to say after my second PCP visit it took about a month to get a diagnosis. I've heard so many horror stories of misdiagnosis and waiting years to finally find out. So, I def think I was one of the lucky ones.
What were your symptoms? How long did it take before you got your diagnosis?
I probably will a part 2 and go more in depth with the actual visits and tests that led up to my diagnosis.
Have a good weekend everyone!
XOXO,
Geri
2 comments
It amazes how clueless so many doctors are, and in particular if you are young and female you are dismissed and they assume you are exaggerating. I am glad you finally found out what was wrong.
ReplyDeleteAllie of
www.allienyc.com
I'm so glad you advocated for your own care- it totally paid off and got you a quicker diagnosis!
ReplyDelete-Ashley
Le Stylo Rouge