I am a 25 year old woman in Montreal going through a painful and unidentified acute health crisis.
I would really appreciate anyone who has insight on my symptoms, I have been getting progressively worse and worse over the last four (almost five) weeks and no one can help me, especially now that it’s become so complicated. I am really desperate for answers, please help me if you can. I am going to keep it in point form, but please bear with me.
- carcinoid tumour removed from the appendix in Oct. 2003, followed by bowel resection to clean up areas that the tumour intruded on.
- arthritic-like pain in hand and wrist joints, toes, ankles and hips since I was 12 or so. It was diagnosed by my rheumatologist when I was in my early twenties to be "an arthritis related to ulcerative colitis " since my brother has severe ulcerative colitis and it runs in my family. No damage detected at X-rays taken at age 20.
- migraines about twice a month, lasting 3-5 days, since I was 20. (treatment futile)
- a bad ovarian infection in summer 2006 and UTI that went undiagnosed for several months in summer 2005...mainly because I never develop a fever.
- I am on no medications.
AND NOW, IN 2007:
APRIL 15 - stabbing pains in my right armpit, unrelenting
APRIL 16-17 - stabbing pains spread through my right arm, making it weak with stabbing and stinging pains.
APRIL 18 – went to ER. No fever. Dr. rules out infection based on no fever and no redness. Dr. notes that right breast is harder, lumpier, more swollen and larger than left breast (still soft and A cup). Refers me to speak to my gynecologist.
APRIL 19-24 – Right arm, armpit and even breast now get much worse, more inflamed. Stabbing and stinging pain on the right side. Essentially I lost good functioning of my right arm, too painful to use and feels very inflamed.
APRIL 25 – Gynecologist notes that right breast is indeed harder, no definite masses found by his manual exam, refers me to breast specialist.
APRIL 26 - 29 – Now stabbing pains in left armpit and left breast, same feeling of invasion as before. And a weird tightness in right leg, feels uncomfortable and swollen. I go to ER, who rule out infection, DVT in the leg and PVT in the chest. My breasts burn one minute and feel ice cold the next. My left breast amazingly grows (in one weekend) from an A cup to a C cup… with stretch marks. (For a while it was bigger than my right breast, but now about the same size) Breast texture has changed to more porous (but not as dramatic as pictures I see of the orange peel breasts) and breasts and chests continually have red rashes and hives that appear and disappear. Two small bruises (bluish, not pimples), appear on left breast and have not gone away since. Stabbing pains in both breasts, usually originating from the side. Still armpit pain very bad.
APRIL 30 – Stinging, stabbing and weakness spreads to my right leg. It hurts immensely to walk on it, especially on this day.
MAY 2 – see breast specialist, who after 2 minutes says at my age it is impossible to have any serious breast condition and that my breast pain and growth must be due to a hormonal spurt. (Note: I am not pregnant – have not had sex in 7 months even – and have not been on the pill for almost 3 years) Due to the rapid breast growth and pain and the bruise, I requested a biopsy for Inflammatory Breast Cancer, she refuses based on my age. Since my condition was getting much worse, I called a friend whose uncle is a surgeon and set up an appointment for the next week. His secretary says getting a biopsy to rule out IBC would not be a problem. I had contacted a few cancer associations for advice, whether it was normal for me to pursue a biopsy or not.
MAY 7 – Attend the appointment with surgeon. As soon as I walk in the door, he assures me nothing serious is going on at my age. I’m in a lot of pain, so this doesn’t really assure me. He examines me and tells me that despite my pain and symptoms, IBC would not be in two breasts at once. I ask him about leg and arms, he says that it’s not related. But they all came at the same time, so I’m sure the pain is related somehow, or one caused by the other. He says it is possibly fibrocystic breasts.
MAY 10 – The pain is much worse, the bones in my arms and legs feel fractured (and I know what a fracture feels like since I fractured by right arm twice when I was a kid). I have hives and rashes over my breasts, chests, legs, arms and abdomen very often. I go to the ER, who runs some basic blood tests (among them CBC and ESR) and tells me to return to see a neurologist in the morning.
MAY 11 – See a neurologist who rules out neurological problems. Suggests rheumatologist.
MAY 11, NIGHT – I return to ER because it has spread to my back and what feels like my skull. When people apply pressure to my bones, it develops into a red rash, sometimes with hives. Sent home with painkillers, told to wait for rheumatologist appointment on May 14.
MAY 14 – visit with rheumatologist, sees no real inflammation of joints. I show him hives or redness that results from touching. He’s not sure what tests to do. I ask him about my history with the carcinoid or the possibility of having a biopsy for IBC, and he tells me it’s not likely I have cancer or that I need a biopsy, since it is in both breasts.
MAY 16 (TODAY) – No pain has disappeared. I got my period two days ago, it is light and was a week late but at least I got it. Still no relief though. My breasts keep growing and getting harder and lumpier, and are painful to the touch. There are still stabbing pains in them, especially in the sides of them. The two little bruises (each size of a dime, maybe) on the left breast are still there, one is worse. My breasts are not really red as much as the texture is rough and changing, with little red capillaries (?) showing in little patches. Nipples are scaly but not inverted although maybe flattened a little. I often have red patches on my chest, face, arms, legs and torso. I usually have big worm-like hives too. Still lots of bone pain, more so than before in my back. I have a light cough appearing just over the last few days, still no fever. The stabbing pain in my armpit is always there, and my armpits feel swollen to me. If I press on my armpit (either one) it is especially painful and hurts to press, and when I do press, a red rash appears and persists on both sides of it. Also… red hives and rashes appear all over my body when I do this. My limbs are too weak and painful to use. And the back of my skull feels like I have a cold or something. I have tried dilottid, Tylenol, advil, codeine for brief periods of time throughout, never long enough to cause addictions or other side effects. Now when the pain gets really bad (like today) I take a dilottid but I’m much rather avoid that. I just want this to be over and get back to work… whatever this is has disabled me for the past 4 weeks.
SO…WHAT SHOULD I DO NEXT?
Any help would be appreciated. I was feeling so good health-wise before this, since last summer. This feels acute and not chronic. I really need advice.
THANK YOU VERY MUCH (sorry for the length)
Lynn in Montreal