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    Old 04-23-2008, 07:06 PM   #1
    Jenbeth28's Avatar
    Join Date: Jan 2008
    Location: Memphis, TN
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    Jenbeth28 HB User
    New, in limbo, long story, Thanks!

    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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    Old 04-23-2008, 07:33 PM   #2
    thoracic's Avatar
    Join Date: Apr 2008
    Location: SYRACUSE
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    thoracic HB User
    Re: New, in limbo, long story, Thanks!

    You have a lot of problems i have, I have RSD i was on the rsd site and was looking at ms people, ms is alot similar. But doctors have a hard diagnoise ms. It will show up on a mri, look up rsd you might be suprised to find out what it does to you. It will make you go crazy burning stabbing pain ectect, please look it up. Good Luck
    Darlene I have had RSD for 2 yrs, doctors didnt now it. Went a head in did sugery made it worse.

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