My name is Morgan, I'm an 18 year old female. I've been sick for around 10 months now (even though it feels like it's been years). I've been to two different primary care doctors, a neurologist, a rheumatologist, an ENT, and I've been to the ER three times in the past four months.
First of all, I've had chronic tinnitus for 10 or 11 months (and I mean chronic). It hasn't gone away for a second. Sometimes it's pulsitile, sometimes it's roaring, sometimes scraping, sometimes it's a piercing high-pitched shrill. My only diagnoses are: Osteoarthritis, HPV high risk, ADD, and mood disorder.
I've had palpitations, tachycardia (resting: 100-154; during exercise: 180-200), hypotension (lowest was 88/56), dizziness upon standing and stretching, dyspnea, migraines, severe stomach pain (tearing and cramping), severe pelvic pain (stabbing), raynaud's phenomenon, disorientation.
But there are a couple of things that confuse me the most. And whenever I bring them up to a doctor, they seem baffled. I can't find anything online either.
I get this strange discoloration of my skin. My arms get really red and splotchy with white spots, almost like they're meaty. They're usually cold at the same time. But once it goes away, my hands get really hot and stiff and the veins bulge. This kind of happens to my feet as well, but instead of red, they get purple and my toenails get greyish. When my doctor looked at my feet during one of these "episodes," she seemed very confused.
The other thing is like I temporarily lose my mind. I start to feel like the room is spinning and like I don't have the energy to move. It's like I go into shock. During this state, it's near impossible to find words and form sentences. I completely detach and my eyes just glaze over. I'll keep spacing out and have extreme difficulty snapping out of it. My eyes will blur in and out. Sometimes it'll hit me in the middle of a conversation. I could be in the middle of a sentence and just completely forget what is going on. Along with this I usually hallucinate (visual, auditory, and tactile) and get overwhelmed with an unexplainable terror.
I've had what feels like every test possible. I can't remember every test but I can say a few of them.
I got tested for a bunch of autoimmune diseases. Sed rate test was normal, CBC was good, blood sugar was good, liver and kidneys are healthy, echocardiogram and ekg were good, brain MRI was clear (except for the sinusitis), spinal MRI showed degenerative changes and arthritis in my neck, rheumatoid factor was negative, etc.
I really want to know what is going on. I haven't been able to work or go to school. My social life is barely existent. My life is in pieces and I desperately want to put it back together again, go to school, and become a nurse, but my health is just throwing me to the ground.
MOE, I feel for you, hon. All I can do is suggest a couple things for your docs to look into. You have many symptoms associated with vasculitis, which can be a cause of the kind of ear trouble you have, along with a lot of additional symptoms like what you have, which vasculitis basically boils down to inflammation of the blood vessels. Your rheumatologist can do a biopsy of your sinuses, since that sort of seems to be point of origin, and see what the labwork looks like, it will have a pattern that would confirm this diagnosis. Vasculitis is caused by many things, to include lyme disease, but it's the symptoms that remind me of you, what with your existing sinuses bothering you, arthritis, tinnitus, hypertension, and, one of the things that bothers you so much, visual changes.
Vasculitis can make your hands do like yours do, anywhere from a mild Raynaud's version of it as you have, all the way to a long-term untreated giant scabbing appearance of an entire extremity! The anxiety and crazy stuff you feel in your head is as a direct result of all these very distracting symptoms you have, any one of which would send many people around the bend, altho vasculitis in and of itself can mess up your thinking.
So, talk to your rheumatologist, and if he's not expert in vasculitis, he can refer you to docs who are. For example, Johns Hopkins has a whole department devoted to it. Also, try to remember back when your ears started to carry on, if you went through a woods or on a hike or if you just moved or traveled to a place where you would have simply been around overhanging vines and shrubs that you weren't used to, and once you get your head there, see if you can remember seeing a pretty large pink rash-like appearance to your skin somewhere (I'm referring to the Lyme tick biting you).
And in the meantime, do me a favor, if you aren't already, take a name-brand, complex multivitamin/mineral supplement with iron twice a week, drink extra water, and get a PLAIN saline nasal spray, squirt that in your nose whenever it feels kinda clogged up. Lastly, when you see your doc, have him review side effects of ANY meds you are on, there are some fairly common ones that can cause SOME of your symptoms. These last few things are my other thoughts on what this could be, but your constellation of trouble points to what I think is vasculitis, altho could be other stuff. I hope this will steer you in the right direction, but at least it's something else to grab hold of for a while, until someone finally figures out how to treat you. GG
I can completely understand where you are coming from! I have all of the symptoms you have except for the arthritis in the neck which I haven't been checked for yet. My symptoms started with extreme fatigue then I sarted getting tachycardia. I was told I had PSVT and then went to an electrocardiologist who said that I didn't have PSVT and that there was some underlying reason for the tachycardia. I started seeing a family dr who just put me on anti anxiety meds and beta blockers which did not help with the tachycardia. Then I started getting blurred vision and tennitis. It progressively has gotten worse. My eyes are really blood shot all the time and I've tried all different kids of eye drops and nothing helps. I don't have allergies either. I went to an ENT and he tried saying my symptoms were all from TMJ which I dont know how TMJ would cause double vision. I have memory problems and I get confused a lot and I'm dizzy all the time. I had one MRI of my head and it was normal. I get stomach pains and had black stools so I got a colonoscopy which was normal. I get these weird freckles that come on spontaneously. The veins in my hands and feet bulge and when they get cold its really painful. I have little red dots all over my chest that appeared after popping what I thought was a pimple, but I dont think it was now because my symptoms got way worse after I popped it. Plus I had the bump there for months and it didnt go away like a pimple would have. Now Im getting more of them. I have one on my cheek and my neck. It;s really scary. My symptoms are usually worse in the morning with my double vision nausea and dizziness. Ive had tons of blood work done and everything is normal. Now im waiting on a lymes and ANA test to come back. Another thing is that I get bruises without being physically hurt. Everyone keeps saying its in my head but i know it isnt. There is no way that I could just imagine all of this and feel this terrible all the time because of anxiety. I hope that you figure this out and I will be praying for you.
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