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Old 05-23-2013, 06:46 PM
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amycompton amycompton is offline
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Join Date: May 2013
Location: Duluth, Ga
Posts: 14
10 yr Member
amycompton amycompton is offline
Junior Member
amycompton's Avatar
 
Join Date: May 2013
Location: Duluth, Ga
Posts: 14
10 yr Member
Default Rare disorder

Elayna, I can't say I have any answers for you, but I definitely have sympathy for you having gone thru the same thing, and continuing to do so. I had/have the majority of your symptoms; I had the positive ANA with the rheumatologist that lost interest after a while and all those things. I ended up at a neuro when I was in my early teens who diagnosed me with partial seizures and as I got older I had some grand mal seizures after having about 6 or 7 over six or so years, and was diagnosed with epilepsy about a week ago bc no one else had any other ideas. I even went to the mayo clinic for a month with no luck. I have extremely hi heart rate and so many other symptoms that don't make sense, definitely nothing epilepsy covers. I wish I had answers for you, but I wanted you to know there are other people out there in the same situation in which they actually want a doctor to tell them something is wrong with them and stop looking at you like you're seeking attention or depression is causing all of your symptoms.

Keep trying and try as hard as it may be not to get too frustrated.
There are more of us out there than you think.
Keep in touch. You'll be in my thoughts




Quote:
Originally Posted by Elayna View Post
So, I just got back from the neurologist, pretty frustrated.

I'm 21 years old, I've been dealing with multiple symptoms over the years, and have been told time and time again, they don't know what's wrong with me. I was told I possibly had lymes disease, test came back negative, told I had lupus for a period of time but the test was negat

I've tested positive for ANA everytime they tested me, except for the last time they tested it was negative. My rheumatologist seemed interested in my case for a while, then lost it when tests kept coming back negative, didn't even bother saying he thought I had lupus, he said nothing about my test results, we had to ask the nurse about it and he came in and said he thought it was lupus. Ended up seeing another dr and he checked the test and said they were negative.

Well, needless to say I've been to quite a few doctors, been told I was perfectly healthy by one, others just seemed rather dismissive, until the new-er symptoms I've been having. My PD sent me to Neuro after doing a MRI scan, which came back normal, it was without contrast.

My symptoms are,

Muscle weakness, heaviness in limbs mostly legs, balance issues, memory problems, forgetfulness, can't remember the right words and saying the wrong words, fatigue, and I've started having trouble with my swallowing more recently, muscle stiffness, having to urinate a lot more frequently and the list goes on.

The neurologist I saw was pretty cold, she was straight to the point for everything, seemed rushed, she didn't have a good bedside manner I guess you could say, and asked me really specific questions which honestly I think you'd have to have perfect memory to be able to know the answers to

I've been dealing with this for years, and at the end she said she doesn't really see anything neurological going on, and she doesn't know what's wrong with me. She's sending me to a neuro-psychologist for my memory problems, urologist for the urinary problems and I'm getting a swallowing test. I'm going to do them, but I'm just alittle discouraged because I thought for sure she'd be able to find something.

Is this normal behavior for neurologists, or specialists or do I just have bad luck?

Oh and I've seen the babinski test done before, and she did it on one foot while they were hanging off the table and she started at the middle of my foot which I thought she was suppose to start at the heel? Maybe I'm wrong, she did the rhomerg test which I know i failed because I fell back and couldn't keep my balance, along with the walking heel to toe, kept falling to the side and losing my balance.

I guess I'm just wondering if others have had similar experiences, does it sound like she did everything right, because it honestly seemed like a sloppy job to me, but I don't know. I'm sorry if this was a lot to read, I'm just frustrated and I wanna know if I'm just overreacting...Thank you for taking the time to read.
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