So I am sitting here at my computer, a nervous wreck, and I have finally run out of google searches to perform. I didn’t even know that was possible. I am astonished that through billions of websites, blogs etc etc etc, my attempt to find a single person on the planet or even a website that can help explain what I am going through does not seem to exist.
Whenever we are faced with a medical situation that leaves us confused and scared, a first response is often to search google for similar stories or answers. I have come up empty handed. It occurred to me then, that perhaps I should write the first, so that any woman in the future who might be dealing with this situation will have a place to turn.
First a little history…
For the last several months, I have been battling a strange multitude of health issues. The symptoms are so “all over the place” that a diagnosis feels impossible. After all your basic tests, x-rays, scopes, blood panels, etc etc etc.. the docs have come up empty handed and have proceeded to blame stress and anxiety, and send me home with Xanax.
Despite their “professional opinion”.. I know my body. Something is wrong. No one would believe me. I was called a hypochondriac. I was told it was all in my head and to stay off the damn internet! I refused.
Fast forward to the beginning of October 2015. I have a random cough that just suddenly shows up. Daily. Totally dry and only occasional. Probably nothing to be concerned about. By the end of October my cough had become slightly worse and the lymph nodes in my neck had become enlarged. My SCM muscle had also swelled even further, and I was plagued by constant pain. Still no concern from my doctors, but I was referred to a neurologist to see about nerve damage in my neck. It was also determined that I had lost the cervical curve in my neck and that I had developed arthritis there as well. Well, the neuro has a three month waiting list, so I couldn’t get an apnt with him until the end of January but ok.
Beginning of November I am taken down by an illness so severe that I felt like I was dying. I couldn’t even get out of bed. It was like the worst cold and flu ever…. but without any of the “common” cold or flu symptoms. Just all of the worst possible side symptoms. The closest thing I could compare it too is the symptoms of glandular fever in overdrive.
Eventually this passed and I convinced myself that this had been the cause for the swollen lymphs and that as I got better, these things to would get better. They did not.
Mid November, I wake up one morning with a swelling in my right armpit and horrific sharp pain. It doesn’t feel like a swollen lymph, so I assume that I had somehow hurt a muscle and that it just needed time and rest.
Within a few days, the swelling had gone down and the pain had lessened. It unfortunately also shifted. I began having constant dull achy pain all through my right chest/upper breast/armpit area. I convinced myself this was probably due in part to the spasm in my SCM muscles and nothing to be concerned about.
By the beginning of December, my cough had become much worse, my lymphs were still swollen and the pain on my right side was almost constant. Getting a good nights sleep was a challenge. Again, all doctors are unconcerned, husband now thinks I am nuts and yells anytime he seems me go to Google, and the doctors all think I am a stress and anxiety ridden hypochondriac who just needs more Xanax.
On December 14, 2015 – I notice a small lymph node has appeared just towards the bottom of my right armpit. Very small in size and does not have any unsual characteristics, but still. I know something is not right. My husband and I proceed to have an all out fight about it, because he is “so tired of my paranoia.” I cry myself to sleep feeling crazy.
December 15, 2015 – I convince myself that maybe everyone is right and I am just going nuts. That maybe I just need to relax and calm down. I decide to soak in a hot bath and read a book. While in the bath and washing my body with soap, I notice a black colored discharge come out of my right nipple. Instinctively I reach over to the left nipple and give it a squeeze. Same thing. After about 2 minutes of sitting stunned in the tub, I reach over to my cell phone, call my mother and without thinking, immediately spout out “Mom, I need to go to a doctor!”
I am in pure panic mode at this time, and my mother, thankfully who knows me so well, says “Get dressed, I’ll make phone calls.” I love my mother. 😛
My normal OBGYN was busy and unable to see me so my mother scheduled me with another OBGYN she was familiar with. They took me in immediately, took samples of the discharge for a smear test and gave me referrals for an ultrasound and mammogram ASAP.
December 16, 2015 – I decided to go back to a former GP who I had not seen in awhile. I was tired of all the doctors who kept telling me everything was in my head. Obviously it was not! Hell, now it’s even in my boobies! 😛
She was extremely thorough, went over ALL my relevant history for the past several years including my extensive international travel history. She ordered blood tests for EVERYTHING imaginable to be performed immediately. Among them: Lupus, Lyme Disease, Malaria, Westnile Virus, Valley Fever and of course a re-check of all the basics.. metabolic panels, thyroid, vitamin deficiencies etc etc.
After leaving her office, I went next door to the lab, and had about 10 industrial sized tubes of blood taken. This was a lot for me, considering I am about 5’7 and currently at about 106 lbs. (I have been struggling with unexplained weight loss for the past 9 months.. again no answers from the doctors on this one.)
After my blood work, I popped on over to the next lab, where they performed an ultrasound and a 3D mammo on both breasts. This whole situation probably requires its own humorous post, and I might write about it when I am in the mood, but not right now. However, anyone with questions about these, you are more than welcome to ask me in the comments and I will be glad to answer!
December 17, 2015 – This would be today, as I am writing this. Today I received a call from one of my doctors ( I now have about 4 at this point).
The results of one of my blood tests came in. It noted that my prolactin levels were in the normal range, which ruled out a pituitary tumor. This news kinda sucked really. It means other conditions such as cancer are still on the table. Most pituitary tumors related to this condition are benign and non life threatening. They are treated with hormone therapy, so all in all, a pit tumor wouldn’t have been that bad. Certainly not as terrifying as some of the alternatives I am now facing.
I am now awaiting the results of all of the other tests. I will update here as I hear anything. I hope that any woman facing my same situation and looking for answers will be comforted to know that she is not alone. I hope that whatever answers I get to provide in the future will be positive ones, both for myself and any woman facing this situation herself. As for now, I suppose I don’t have much else to write. I will post notification when I update this page, but for anyone wanting to follow along, you might want to bookmark now. Thanks for reading and as always, luv you guys! *Hugs*
*Update 1* It’s been about 10 minutes since I finished writing this, but I already have my first update it seems! lol One of my Dr’s just called again and said that they have the initial results of my Ultra/mammos and they would like to have an MRI of my breasts done. They said it can take about a week for insurance to approve the MRI so they are going to file that request right now. That’s all the information I have been given so far.
*Update 2* – Dec 18, 2015 – Doc called again, results in on smear test (for the yucky black stuff)…. “There isn’t any sign of infection so we wont really be able to say what’s going on til we do the MRI.” *Sigh*
Ok, so this isn’t an update, but I just felt like sharing my thoughts. Today was a little bit of a blow. I’ve been trying to remain positive and optimistic about all this. I guess part of me was still really holding out hope that they would just be like “Oh! It’s just an infection! Here are some antibiotics so now you can be all better!”
Not sure which is more frustrating: Not getting the answer you hoped for.. or not really even getting any answers at all! Guess I just have to keep waiting…
*Update 3* December 22, 2015
Insurance said I didn’t need authorization for an MRI, so I am scheduled to go in on January 5th. Maybe I’ll finally have some information soon! *More waiting now*
*Update 4* – Dec 29, 2015
Just returned from the Dr.’s office. I had also noticed a few more lymphs pop up under my right arm over the last few days. The short version is that I was right about EBV and having a round of glandular fever back in November. My T4 is a bit low, which isn’t surprising since Hypothyroid runs in my family. The bad news is that my white blood cell count is high. It is my Dr’s opinion that we are now at the point where it is time to start seeing a specialist. After my MRI on the 5th, I will be getting a referral to see a breast specialist and we will go from there. No one in the room wanted to come out and say what we were all thinking, but I did it anyways just to see how my Dr. would react… I guess I was hoping for a “No, I don’t think it’s that..” kind of reaction. Instead I got “Mmhmm.”, confirming that yes, we are now at THAT point, and THAT might be my reality. Still, as a last ditch effort to hold on to hope, I requested to be put on a broad spectrum antibiotic just to see what would happen, in case there was something simple that we somehow missed. My Dr. agreed and gave me the Rx. I’ll have my white count retested in 30 days but hopefully I will know more before then anyways. Back to the waiting game now!
*update 5* jan 8, 2016
Had my MRI a fews days ago, and spent the last few days in hell waiting on results. The pain, the discharge, the lymph nodes… I just want answers!!!
Too annoyed over the “answers” I got to even try to type them again here, so I will post screenshots of the updates as they were given to my family via text…
So now we will be waiting on the other Drs opinion and the recheck on my white blood cells on the 20th. Arghhhh!!!