posted
I was diagnosed, visible bulls eye rash and flu like symptoms, when I was 10-11 years old. I was put on Tetracycline for a couple of weeks or so an dwas better for a bit. I remember always being tired no matter what, gaining major weight when I was always pretty thin and depressed. Not suicidal, just sad.
I did have an injury to my knee in 1997 that caused recontructive knee surgery in 2001. That ended up causing the bones in my right foot to break, from favoring my left knee for so many years while waiting for surgery. Reshaping of foot. Muscle aches, joint pains and much more. Now on to the rest.
I have always had a Malar rash on my face and red on my upper arms. People always think I have sunburn. Only in those areas? I must be a magician! I have had light sensitive headaches off and on my whole life. My vision and hearing were better than normal. Super powers. I know, I sound crazy, but it's true. I could see in the dark and hear things from far away and over lots over other noises that no others could hear. I could smell things NOBODY else could smell.
I have experienced SCA sudden cardiac arrest 2 years ago. I was told I had an enlarged heart and a leaking valve then. Now the ECHO is normal. No treatments were ever done. I went on with my life and all resumed and I was fine. Other than my knees and feet hurt. Getting up in the morning, I would have to turn my feet on their sides to walk to the bathroom or walk with a gimp. painful! Still have to! I experience Raynauds whether in hot or cold rooms, inside or outside, sitting or standing. I also get the splotchy skin on my feet, legs, arms and palms...similar to what newborns get. I can't remember the name of it.
In May, my knee was really bothering me. I went to a new GP for an orthopedic referral. He put me on Naproxen for inflammation and sent me to the Ortho Surg. OMG!!! Within an hour my BP was high, my vision went nuts and I just didn't feel good. I didn't think it was the Naproxen just yet. When it was time for my next dose I took another. Same effect. Yep, it's the Naproxen. I stopped. Well, now I have Papilledema, Intracranial Hypertension, Extreme Malar Rash and my heart has started up with issues again. They did an Lumbar Puncture on me and pulled out 36 ML of fluid and I had an opening pressure of 29, according to my Neuro. He said wasn't extremely high, but high. They put me on Diamox and that made me deathly sick. Then he put me on Prednisone. OMG!!! Face swollen, burning all over my body was worse, aches and pain 10 x's worse and my heart went nuts. Oh, back up. My GP put me on Lisinopril for BP. That didn't help the heart rate. Resting was getting in the high 100's. I am on Topamax now and that has helped the head pains, but the pressure is still high. They have ran blood work, while I was on PRednisone. ANA came back <1. All tests were <0.2 other than the Scl-70 which was 0.4, so not sure what that means. My Neuro wants me to stay on Topamax and have a Thyroid Peroxidase test. We asked him about LD flare up when I saw him the second visit, July. He said NOT POSSIBLE!!!
I am sorry for my all over the place post. I cannot think straight anymore. I go in and out of consciousness. I call them sleep coma's. No matter what I do, I can't stay awake. My heart is acting weird. I have had an MRI, MRV, CT-Angio and Neuro said all are normal. I did get a copy of one that said I have empty sella. Neuro said I didn't. Someone is lying. Not sure what to think anymore. I am not able to be there for my kids anymore. My husband is going out of town soon for work and I am literally scared out of my mind. I am home with our 4 year old, we live in the middle of the country in a small town. i go in Monday to have a Reveal monitor put in to catch my heart issues. Can all this be LD related? I am not supposed to be driving and really have nobody to take me to my appointments. My mom does what she can, but that story is for another day. LOL
I thank YOU ALL for your information on here. It has brought tears to my eyes reading them. Many have my symptoms and I only fear that the LD I was told I had years ago never went away and my issues over the last 23 years have just been passed off as stress but really LD. I hope not, but fear so.
Posts: 5 | From Florida | Registered: Sep 2011
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![[confused]](graemlins/confused.gif)
so not sure what that means. My Neuro wants me to stay on Topamax and have a Thyroid Peroxidase test. We asked him about LD flare up when I saw him the second visit, July. He said NOT POSSIBLE!!!
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