hello,
(32 y/o female) I am commenting here out of desperation seeking some advice / any education on my situation. While I know there are limitations on diagnosing or providing medical advise on the internet, I am hoping for some guidance in my situation as I feel I am battling this alone, I'm scared, and I lack support or guidance from any of my providers. I can try to summarize my health experience thus far, in hopes maybe someone has had a similar experience, has any guidance, or words of encouragement.
In 2022 I had an episode lasting almost 6 months that started out with severe fatigue (I'm talking unable to get out of bed for days on end type of fatigue) drenched in sweat upon waking, often having to change my clothes or my sheets due to waking up in a cold shiver from the soaking wet sheets and clothing. I was so cold and hot and I felt just generally unwell, like I had a flu - but I did not. My muscles ached, my head ached, I had abdominal pain, and a new onset of painful rashes primarily on my face, I also started to have low grade fevers, never rising above 38.2 (from what I recall) I started to drop weight extremely quick - I had no appetite, it was quite a dramatic drop in about a month. I am petite at 60inches tall and had consistently stayed at 45kg - 49kg, at the end of this "flare" I was about 39kg. One night, my friends had convinced me to go out and grab some drinks. I had 1 or 2 cocktails and began feeling quite ill, I turned pale, shaky, enough for my friends to show concernment of the noticeable shift in my appearance. I was extremely nauseous and felt "poisoned" I promptly went home thinking I had actually come down with the flu and was able to fall asleep. I woke up at about 4am with intense abdominal pain, felt like daggers in my abdomen, I could not stop vomiting. I thought I was perhaps hungover but after about an hour of dry heaving and worsening pain I knew something worse was at play. I somehow drove myself to my parent's house and they took me to the emergency department. The physician was worried I had an appendicitis, to note: I was afebrile at this time. I had a CT with contrast of my abdomen that showed:
Lung Bases: 4mm subpleural nodule within the right lower lobe
2mm subpleural nodule within the right lower lobe
Bowel: Apparent wall thickening of the colon
All other areas are noted as unremarkable.
Because appendicitis was ruled out, the physician was suggestive that I had colitis - either from infectious nature or caused by IBD such as crohns disease or ulcerative colitis. I submitted a stool sample that ruled out a long list of bacterial/viral/parasitic infections and was referred to gastroenterology for an upper endoscopy and colonoscopy. In the week waiting, I continued to have diarrhea, intense abdominal pain, and vomiting, I was unable to keep any food down. my fatigue was at its worst. I have had IBS so abnormal bowel movements were not new to me - but I had never experienced anything like this before. After my EDG/colonoscopy, I was told that there was no evidence of IBD and was given the diagnosis of "functional IBS" and internal hemorrhoids (sigh) I was told by the physician that my mental health likely caused this episode of abdominal pain (I had recently gone through a break up) and that I needed to work on my mental health and my stomach issues would improve (sigh, again) I struggled for months with this abdominal pain, I was eventually able to put some weight back on, but my fatigue and other symptoms remained the same. I was told that any type of follow up was not warranted. Reading back on my physicians notes from the time breaks my heart, the pain I was in, how I was pleading my physicians to help, and was dismissed. One note even stated, "Patient is tearful. She states she cannot take care of herself, she is scared, she lives alone." My pain was deduced to a psychosomatic issues due to my mental health.
My stomach issues continued, not to the same severity but I feel my energy levels never went back to what they had previously been. I began having issues regulating my body temperature, I was always cold. I was always told "my labs were normal" other than episodes of anemia being caused by either low B12 or Iron. I was never able to put weight on, my weight continued to dip and rise with no changes to my diet. I began having episodes of hot pink flushing to my face, starting on my nasal bridge spreading to my cheeks - they were not raised or "rash" appearing, they looked like a sunburn, these would happen around 3pm daily. I was not on any medications other than my Nexplanon hormonal birth control implant that I had in place since 2019. I figured this was to blame. I began having swollen nodules on my chin and cheeks, they were not acne, the were mobile, not necessarily tender. I of course picked at them, thinking I could somehow pop them but nothing would come out. My skin started becoming extremely dry, as well as my eyes and throat, and mouth. I began having the sensation that I was choking, I had difficulty swallowing when eating and drinking due to this feeling that my throat was dry or something was stuck in it. I noticed a lump on my left occipital scalp, it was round, mobile, non tender - I assumed it was a cyst.
in 2023 I developed a sudden onset of bilateral inguinal lymphadenopathy - they were hot, extremely painful, and largely palpable, I'd say comparable to the size of golf balls. I was unable to walk or move my legs in certain positions due to the pain of pressure or friction, I could only lay in bed, this lasted over 1 week - they have never returned to normal size. I know I should have seen a physician for this as I was extremely terrified but I live in the states, and I did not have health insurance at the time, I could not afford a doctor or ED visit.
in October 2024 I started to feel that flu feeling, this time it was daily, horrible migraine type headaches that were worse upon waking in the morning, my muscles and joints hurt, I was so cold, my body became so itchy, an itch I couldn't scratch, it felt like the itch was coming from inside my body, not to my skin, it's hard to explain. I was having low grade fevers, abdominal pain, I was white as a ghost, I lost 15 pounds in a matter of weeks. One day at work I noticed a raised "hive like" rash on my abdomen and inner thighs, the rash continued to spread the next two days to my entire body. It didn't necessarily have an intense itch but again, was extremely uncomfortable, I felt like my bones were itchy. like something was crawling in my skin. I could not feel my fingers or toes, they were ice cold. I developed a lace like rash to my extremities. I presented to the urgent care who referred me to dermatology, a biopsy was done but with no specialty histology staining despite my requests, the dermatologist ignored all the systemic symptoms I was experiencing in addition to the rash. I was diagnosed with pityriasis rosea and given a topical steroid, was told the rash would go away on its on in up to 6 wks. The rash never went away, it did however change in appearance. My facial flushing was now red and hot - to the point of others noticing. it was painful. My joints began to swell and turn red/purple. the lace like rash to my extremities are always present. I had an ANA drawn at the onset of this rash which returned negative. Despite 3 different specialist providers referring me to rheumatology, all of my referrals were denied due to my negative ANA. I started seeing an allergist/immunologist who diagnosed me with chronic idiopathic urticaria. All my MCAS testing was negative, I had every blood allergy test drawn under the sun - all were negative, I trialed oral steroids, and Xolair injections, I was on 6 Zyrtec a day, feeling like a zombie while my symptoms were progressing and the medication causing refractory symptoms. My immunologist brought up the possibility of lymphoma and referred me to hematology/oncology who denied my referral suggesting further testing be done (this was in February) my immunologist decided against lymphoma work up (I am still unsure why) My symptoms finally got so severe I went to the emergency department. My RBC and Potassium levels had been low since October (again, not one physician had addressed this) and my ANA came back positive this time (1:40 speckled pattern) however, all reflex antibodies were negative. I was able to get into see a rheumatologist now that I had a positive ANA but again, I was dismissed, was told this was likely a false positive, and that she did not suspect I had lupus or any mixed connective tissue disease. My primary care physician had ordered a multitude of test on me to rule things out. I was diagnosed with normocytic anemia, hypokalemia, iron deficient. I am tachycardia at 120 BPM daily, sometimes rising to 150bpm, I now am hypertensive as well. My weight has stayed at 41.2 despite upping my calorie intake. Rheumatologist ordered CT PELVIS W/O CONTRAST BONE to further examine lymph nodes, and SI joints as they are causing immense pain. I am having this done tomorrow.
It seems that my immunologist, PCP, and rheumatologist all agree that lymphoma needs to be ruled out based on my symptoms. I just don't feel anyone is taking my situation seriously. I am never given any straightforward answers, I am never pointed in the right direction as to which specialist I should be seeing, and despite my multitude of symptoms, my referrals continue to be denied. I want to rule out lymphoma but I know that the only way to truly diagnose an early or localized lymphoma is by biopsy. I have requested a repeat abdominal CT to check the abnormal findings from 2022 and I do not get any responses. I feel even more lost now than I was before. I am scared, I am being ignored, and I am at a loss on how to move forward with finding answers.
If you've gotten this far, thank you, from the bottom of my heart. Is it possible for lymphoma symptoms to wax and wane in the early stages? Do my symptoms align with a possible lymphoma? Hematologist consult with immunologist suggested a Tcell rule out as well as skin biopsies and surgical lymph node excision but again, not one of my physicians has initiated the process. Do any specific CT's identify lymph node abnormalities? Can someone suggest any testing or imaging I can request from my physician? Or share their experience with symptoms prior to their diagnosis? I know everyones story is different, and I am not looking to diagnose myself on the internet, I may not have lymphoma I am aware of that, but I feel I'd find some comfort in hearing others experiences, or if they've similarly felt invisible while battling debilitating symptoms similar to mine, I just need some guidance on what to do next. This disease (whatever it may be) has stolen so much time for me, I am unable to work, and my relationships are suffering. I feel very alone.
LABS:
RBC remains low (high low)
HCT remains low
Potassium remains low
Hemoglobin remains low
WBC has slowly decreased
HIV, Hep C, Lyme Serum, Syphilis, CMV negative.
RF factor normal
Creatine kinase low at 41
EBV IgG positive, EBV IgM negative, EBV nuclear antibody positive.
IgA is low at 82 (lower than it was in 2019), IgG is 851, IgM is 248, IgE 4.
Thyroid labs are normal
Homocysteine 12.0
Ferritin 28
Folate 9.3
Vit B12 234
My WBC and Neutrophils have been intermittently low since this began in 2022
Blood smear scan showed "no evidence of hemolysis, no significant RBC morphological abnormalities"
Peripheral flow cytometry panel "no immunophenotypic evidence of a myeloid neoplasm or non-hodgkin lymphoma by flow cytometry, no abnormal B or T cells, However, a low grade myeloid neoplasm cannot be excluded by this test alone, correlation with complete clinical, molecular, cryogenic , and morphologic findings is required"
