At 11, I started having migraines. Rarely have them now.
2012- I fainted in my bosses’ office. I had just started taking new birth control. Called my doc; he said come in if it ever happened again. It didn’t.
2013- December 2013 I came down with a common cold.
January 2014- I got the flu. Chills, fever, runny nose, and a cough that lingered totaling almost 3 weeks. A long time for a flu. I recovered (Not everyone did. This flu strand was an absolute monster this year).
I drank a half a glass of red wine. Immediately after I got a throbbing intense headache. It felt like something was grabbing my brain and squeezing it. This was the first headache I had that was completely different from migraines I have had in the past. I instantly feared a brain tumor. I took an Excedrin migraine and the headache immediately went away.
ER Visit 1
At the end of February, I started feeling an annoying pressure in my head. It would come and go so infrequently. Then, I got a really bad taste in my mouth, and eventually nausea pretty severe. I also started feeling extremely hazy and out of it. I was terrified. Went to ER. Gave me a CT scan since this was a “migraine variant”. Results= normal. Gave me pain meds, said I had a migraine.
Urgent Care Visit
Symptoms continued. Google told me I had a brain tumor. With this in the front of my mind, I went to Urgent care 5 days later. I passed the neurological exam with flying colors. He said keep my neurologist appointment I had the following week. He reassured me that CT scan would’ve showed tumors, “well most tumors”. I asked about an MRI, and he said my neurologist might order one, but maybe not. But when he said CT scans show “most” tumors, I knew in my mind I had to have the MRI.
ER Visit 2
The next day I went back to the ER, but they did not give me an MRI; they do not do advanced imaging. They gave me fluids, nausea medication, and said they agreed that I needed some more advanced diagnostic testing.
Finally saw the neurologist. She suggested maybe my thyroid. I told her Google told me I have a brain tumor. She told me it was “highly unlikely”. She would order an MRI for me if after thinking it over I really wanted one because she knows some people have to see it to believe it, but she was 99.9999% sure I did not have a tumor. I did not have the symptoms she would expect someone to have at this point.
Surely a few days later, I started having really weak legs, sometimes arms. Were these the symptoms she would expect someone to have? I called her left a voice mail asking for the MRI. Call was never returned.
I went to my caring, gyno. I expressed my deep concern, so he ordered an MRI for me and checked my thyroid. Both came back normal. I was so relieved…for a while.
My symptoms continued and more crept up. I continued to Google. I would hang my hat on the fact that I didn’t have this symptom of a brain tumor, and I didn’t have that symptom. Surely enough, before you know it I started feeling the other symptoms.
He took blood tests and abdominal ultrasound (I had been having a queasy stomach, bloating feeling, etc. which has now subsided). All came back normal. He also did a Lyme test which came back borderline/positive. As the CDC directs, he then sent for the Western Blot test as a follow up. I tested positive for Bands 41, 58 and 23, which is a negative/normal test. Doc said I have no Lyme.
Neuro Visit 2
Dumped my old neuro and went to a second. She did another neuro exam, tested for POTS (my blood pressure was a little low on standing, but I did not present as having the tachycardia component). I told her my main fear was a tumor, she told me I do not have a tumor/MS/ALS (also on my list of worries- my fear knows no bounds). She took blood tests at least, which of course were all normal. With that she told me she does think I may have tension headaches, or some post viral something or another and hopes I get better.
Feeling like I’m having a little more than tension headaches. Symptoms getting worse if anything. My PCP says at this point he would diagnose me with Fibromyalgia. But I asked him since I am having all these normal tests shouldn’t I be feeling better? He said the doctors are missing something so go take my labs to UCLA to an academic doctor and tell him my doctors couldn’t figure it out. So that is my next step, but I am still waiting to hear back about my first appointment.
Meanwhile I’m enduring all of the following symptoms, most of which seem to rotate or appear cyclically:
Daily (Never lets up)
*Head- head pressure, head sensation, (sometimes tingling internally). Primarily left side at the temple above my ear (I used the standard white Apple iPhone headphones to listen to the radio at work only in my left ear for around 1.5 years. This is where some of my tumor fear comes from). The pressure/sensation is randomly throughout the day, but is relieved when I lay on the side, or when I lift my eyebrows. Sometimes I have bowling ball head where it feels really heavy.
*Hazy/Spaced Out/Lethargic/Dream-like feel/Woozy/Lightheaded- It feels like I’m high (I don’t do drugs). Sometimes it honestly feels good. Feels like I have taken a Benedryl. I feel like I am delayed and not moving at the same pace as everything else. It is terrifying.
*Vision- I am extremely nearsighted now, distant vision is blurry. I just started wearing glasses 2 years ago, but I am now concerned that my vision issues are a part of all of this, and of course it is a symptom of a brain tumor. I had my eyes checked twice. All normal.
*Nausea- nausea comes for a few days then leaves for a couple days. It is unbearable. A couple times I have taken Zofran, which just makes me tired and dizzy which are too similar to the original symptoms I’m trying to get rid of. Or, relieved by eating, laying down or burping.
-Legs- my legs are sometimes so weak it is difficult to walk. Although generally I am able to walk, standing in one place for longer than 2 minutes is extremely painful. My legs feel like they will give out.
-Arms- I also have weakness in my arms from time to time but much less frequently.
*Soreness- sometimes I feel sore all over my body. Back, everywhere.
*Ears- feel full like they need to pop. Rarely I feel an inner ear pain. Sometimes when I lay on either ear, it hurts. Very sensitive to sound, whether it is a loud noise, or whether I start talking too loud. I can’t even go to church because it’s too loud
*Fatigue- This was one of the more recently appearing symptoms. I actually take breaks at work to go lay in my car to get a reprieve. When I get home from work, I sit or lay down. I cannot stand long at all.
*Dry- I wake up with dry mouth. Nose is also often so dry when I inhale it is bare in there.
*Brain Fog- at times I feel like I am saying the wrong word, or confusing letters.
*Tingling/Buzzing- sometimes I feel tingling in my feet, legs, arms/hands. Sometimes it’s a full on buzz/vibration.
*Twitching- random twitches throughout body anywhere from eyelid to back.
*Jerking- neuro told me this is called myochonic jerking. I feel like I am shaking internally. Happens upon laying down or sitting down at rest.
CT Scan head- normal
MRI brain- normal
Hormone panel- normal
ANA- normal, sedimentation- normal, B12- normal
Lyme- borderline positive; western blot- negative
This has been going on for 2 months, I have seen 8 doctors and I am so afraid and don’t know what to do next. If you have absolutely any thoughts or can relate it would mean the world to me as I'm desperate. Thanks!