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I have been tested for MS, Lupus, Lyme Disease, FM, & CFS. Still in limboland. Here’s my story.
The newest thing going on: 5 weeks ago my MVR has been bothering me, my left arm has been shaky, my ribs have been hurting like someone was squeezing me tight, & my left eye seems to have a film over it, kinda blurry. No biggie. I have a list of odd unexplained symptoms. Thought I'd just make a note & talk to the dr. next visit. I didn't even put any of these together until I ended up in the ER.
My MVR would not stop bothering me. Flip flop, flip flop, hollowness in my chest. Then I couldn't breath well. So I made a dr. app for 3:30pm. Well when I got to the school to pick the kids up, I thought I was gonna pass out. I called Tracey, a friend that was also parked near the school to pick up her child. She came over to check on me & decided that I did not need to be driving. Tracey drove me to the dr. & my friend Sara decided to stay with me. I was trying to breath but I couldn't. When I did take a deep breath, I got an electric like, shooting pain down the back of my left arm & across my chest. I wasn't getting enough oxygen so I was tingly from head to toe. I felt like I was floating on clouds yet my legs also felt so heavy that I was having trouble walking. I was slurring my words & I was having trouble drinking out of a bottle. I was also twitching all over.
The EKG at the dr. office was normal. The dr. gave me some nitro anyways. He didn't feel like it was a panic attack & didn't want to give me a zanex or treat me any further. He was going to call an ambulance but Sara decided that she would drive me. They saw me right away in the ER & did another EKG. It was normal but my BP was 103/34 which is super low for me. As I was waiting to be seen in a room, I had another one of these episodes. The did another EKG again it was normal. After waiting 4 1/2 hours in the waiting room, I was given a room. They hooked me up to a bunch of stuff & ordered a bunch of tests. The dr. also thought it was a neurological misfire but wanted to monitor me for several hours anyways.
After 7 hours of monitoring, a chest x-ray, a CT & tons of blood, the dr. decided that it must be neurological but to see a cardiologist anyways. After speaking to a nurse friend of mine, I decided to let me PCP handle my care. If I needed to see a cardiologist, she would send me to one. She ordered an Echo & it showed only minor valve regurgitation. So it’s not my heart.
Yet another one of those crazy things that happen to me. I now have a shooting nerve pain in my left jaw when I eat anything. My right toe feels tingly. I still have some twitches or ticks with my face & neck. My left ribs still feel like they are digging into me on occasion. My left eye is still blurry. My left arm is still shaky when I lift it. I am more tired & weaker than usual.
I’ve had issues with my eyes for 1 1/2 years now. I have what I call "googly eyes." My eyes feel like they are jumping around all the time. I get floaters. It seems sometimes like my peripheral vision doesn't work as well as it should. Turning my eyes to the corners hurts. I do have chronic headaches controlled by Cymbalta & Yaz. When I get a migraine other than when I am having a "slapped face" episode, my vision is the 1st symptom. When I look at something or someone its like looking at a hot road, like horizontal waves are all over the place. Sometimes the waves are vertical. I have been to the eye doc. He says that my eyes are healthy & normal. I don't think he's a quack because my cousin has worked for him for 10 years & trusts him. Every time I tell a doc about my eyes they ask when I saw a neuro last.
I have all kinds of other weird symptoms. I asked my GI about my neuro issues because he is treating me for IBS & he dxed me with B-12 def. So he decided to send me to a neuro May07‘. I had an MRI, nerve conduction study (EMG), & tuning fork thing done. She said, "no MS." The symptoms that brought me to the neuro are: Bad eye pain with facial weirdness. My eye would hurt so bad that I couldn't move it & I would get a massive migraine & my face would be super sensitive. Like Opening the fridge would be like putting ice on it & warm water would feel like fire. I call it “slapped face.” Also nerve pain in my left leg. I have had that type of pain for a few years with no insurance.
The neuro was thinking MS by my clinical symptoms. The normal MRI stopped that thinking & mine too until all this leg pain & weakness. She ordered the EMG on my left leg because I told her that pain would shoot from my groin to my knee. When I say pain I mean sharp, electric like pain, stopping me in my tracks & making me bust out in tears. I told her that I was told I had OA in that hip. This was before I found out about the birth defect. After the normal EMG, she said I didn't have neuropathy & probably just had arthritis. WHAT?!!! Did I go through that awful EMG to find out something I already told her I knew? What do you think of the EMG I had? What do you think she did that for? I already told her I had OA in that hip.
In August 07’ I started to have another weird symptom. My right shoulder, then within weeks my elbow & then my wrist would burn, hot on the inside but not on the out. My arm becomes so weak that I can hardly move it. When this is going on, I am so fatigued. And my lymph nodes in my neck are swollen. Like I have the flu without the sinus stuff. Moving my neck is difficult. Figuring it was arthritis, I went to a rheumy. She has tested me for RA, Lupus, Lyme disease, Fibro & chronic fatigue. All tests were normal. She told me I had pre-Lupus & is putting me on watch. Yet in my record she put, “no signs of Lupus, probable Fibromyalgia.“ Now another symptom.
My legs have been bothering me & getting worse for the past few months. The pain started in my left leg so I didn't think much of it because I have a bad left hip. I have recently found out that I have a birth defect in my spine that has caused my femoral head to become flat instead of round. Since I have an "inflammatory condition", this is what my ortho calls "it", it's like I have chronic bursitis in my left hip. I saw something somewhere about MS plaque on the cervical spine. Is that what my ortho thinks is what he said "possibly a birth defect"?
The pain in my legs started out as an ache with shocking, stabbing, throbbing sensations down the left side. Kinda like after a Charlie horse. Or like shin splints in the side of my calf not on my shin. It's kinda like a muscular pain. More like a nerve pain causing my muscles to hurt if that makes since. It's not an over used muscular pain, I used to teach step class & kick boxing. The pain kept me up that 1st night. I rested the entire next day with no pain let up. I took a Trazadone, prescribed to me for sleep, that night & woke up the next day with no pain. Well now my left leg hurts all the time & my right leg hurts sometimes too. I also have a shocking, stabbing, throbbing pain from my left knee to the tip of my pinky toe.
My left legs hurt all the time. 24/7. I have been taking percocet & lortabs to get through the day. It does not matter what I do. Rest does not help. My butt hurts to, where my hip joint is. I guess the bursitis. I have had a freaky thing happen to my right leg every now & again. My inter thigh muscle gets stuck. It freezes up & I couldn't hardly walk. This only happens for a few minutes. My leg doesn't continue to hurt once the muscle unfreezes.
I just want my life back. I know that you can relate. The rheumy said, "to be honest, I have no idea what is wrong with you." That was before the blood work came back. The nurse called with the results & did say that there is no "connective tissue disease". The rheumy checked me for tender points, which I don't have.
One alarming thing that the rheumy said was, "it may be your endo in your shoulder causing all the problems." WHAT?!!! I know that endo can travel far & wide but to cause my arm to be almost unusable, heavy, weak?
I am just frustrated. Afraid that I won't get the treatment I need to prolong my physical well being. I am only 30. I have a great husband & 3 awesome kids that need me to be healthy.
Sorry it was so long. And that I was all over the place. I am like that these days. I will have a thought & poof it's gone. I know that y'all are not docs but I appreciate your opinions. Thanks so much!

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