Good morning everyone,
I'm really new to this (but I did read the stickies on the main page). I'm looking for some help but I guess I should give some background first.
My name is Aly and I'm 24 years old (about
to be 25 in a few weeks). I live in a suburb of Chicago, IL. I'm a mommy to a 3 and a half year d little boy and that keeps me super busy.
My medical nightmare initially began last summer in late June/early July of 2014 but it didn't really get bad until January of this year.
Last summer I came in contact with some ticks at my house as well as my dog had them. Soon after we discovered them, I began super super sick. I had a fever, bad sinus infection and was literally sick for weeks (I was be written). After that, I've been sick on and off constantly (even my coworkers have said I've pretty much been sick since June).
Well in January of this year, I experience what some called a panic attack. I've never been an anxious or panicky person but I was experiencing numbness on my left side of my face, as well as left arm, my heart was racing and I felt like I was going To die. I went to the ER and they brushed me off. So I went home that night confused but ok.
Fast forward a month later and it happened again. Except on the opposite side of my body. This time, my heart rate was out of the room and I was terrified. So I made another trip to the ER. They couldn't find ANYTHING to explain my fast heart rate and sent me home with anxiety meds. So I went to see my gp who told me it was all in my head. After that I saw him 3 times in one week because I literally felt like I was dying. So he sent me to one of the top cardiologist who actually took me seriously and took time to listen to me. He placed me on a 39 day event monitor and ran a lotttttt of blood work. All the blood work came back ok, leading him to believe my palpitations/heart rate issue was stemming from something primarily causing it. He referred me to a neurologist and said he believes something neurological might be going on. So I am now at 4 ER visits, 5 PCP visits, 1 X-ray, 2 ct scans, 1 heart event monitor and countless vials of blood drawn.
So now I see the neurologist 2 weeks ago. She felt like something was going on so she ordered an mri of my brain, mra of my head and neck as well as blood work. All came back ok except a slightly narrow artery in my brain but she said people are born with it and it shouldn't affect my life and my ANA levels were abnormal. So off for more blood work just this week. She had tested me for lyme (just the Elisa test tho) and said it came back negative. When I challenged her about
my symptoms continuing and worsening she said lyme isn't an option because my test was negative and I should get that out of my head. Instead she ordered an mri of my c spine as well as an emg. I told her my fear of als because I was having weakness of my left side (my arm/hand/leg/foot) and she said "you don't have als, you don't get dizzy with als and you're too young".
So now I'm back at square one with no answers. I'm still waiting on some blood work to come back but I've had to take it upon myself to research Lyme disease and look into further testing. I've got an appointment with a clinic in 2 weeks to get a full lyme panel but it costs $275 out of pocket but I believe they send it to the igenex lab. I'm having a hard time finding a LLMD in or around my area. I found a couple in Wisconsin but one flat out turned me down and refused to treat me or accept me as a new patient.
My aunt who's a nurse told me I have all the tell take signs of late stage Lyme disease and is urging me to visits a LLMD. Im trying! But I'm so exhausted between feeling like I'm dying everyday and working and taking care of a 3 and a half year old.
If anybody, ANYBODY has any advice as to what I should do now or what direction to go in or info of LLMD in my area I would so greatly appreciate it. I cry all the time because I feel so alone with all of this. It's hard to have doctor after doctor tell you you're find, you're a healthy young girl and it's all in my head. No, it's not. I need help!!!
Quick review of my symptoms
Tachycardia/palpitations
dizziness/vertigo
Bell's palsy
muscle twitches/weakness (especially on my left side)
headaches/brain zaps
shortness of breath
pain by my ribs
Pain in my joints
Fatigue
Brain "fog"
Slightly slurred/affected speech (apparently only I can notice it)
Many more that I'm forgetting because it's early and this stupid brain fog!
Post Edited By Moderator (achievinggrace) : 4/8/2015 6:00:13 AM (GMT-6)