Abnormal MRI's lab results. Wondering where to go next.

[Braintoobig]

:) Not looking for a diagnosis, I just need a little direction.
Over the last year or so, I've had strange symptoms that don't really seem to be related. My migraines I've had my entire life suddenly got so severe that they cripple me and I have to stay in bed for a couple days. I had new visual disturbances and now vomit again, which is a symptom I haven't had since I was a small child. I can't walk, the room spins if I try to move around and I nearly pass out. UH WEIRD!

Fast forward to September 2010, my lymph nodes went wacky and they were popping up all over the place, tender and slightly swollen. In addition to the wacky lymph nodes, I had extreme fatigue no matter how much sleep I get or how much caffeine I injest, nausea, and random vomiting episodes. I get really short of breath and my heart rate gets really high upon exertion. At rest, I am completely fine. To add to this, I have been an athlete my entire life and to be knocked on my rear hardly able to get out of bed is just REALLY ODD. I'm 28 yrs old, thin and I eat a healthy/balanced diet, don't smoke, don't drink, and I don't do drugs. I was exercising regularly all the way up until I got sick with all of this. I swear I take care of myself and I was such a happy energetic person until all this junk started.

So far I have seen 7 doctors with each one finding weird stuff but have no idea what to do with it. So they just keep sending me back and forth. At the present, the most information I've gotten is from a neurologist but my next followup appointment isn't until March 3rd and I feel like some of my lab results may cause him to, yet again, send me somewhere else.

Here is the exciting test results so far, YAY the juicy stuff:
History of epstein-barr virus but no current acute infection.
A chiari malformation was found 5mm herniation.
Abnormal brain lesions were also found with no specific cause and are not typical of MS lesions. Whatever the neurologist saw on the brain MRI caused him to run a bunch of blood tests all which were normal except for the following:
Factor V Leiden Mutation ( I was on birth control treating endometriosis, yeah OOPS! Had no idea I had this!)
Cardiac C-Reactive Protein 3.00 mg/L (apparently it means high risk for cardiovascular event)
Protein C antigen 151 "High". Normal values are between 70-140
MRA of brain showed decreased visualization of the distal branches of the right posterior cerebral artery circulation.


Ok so now what do I do? This is major suckage! I don't have an impending sense of doom, I just want to get better but nobody seems to be able to figure this out.
If family history will help then I'll include that too. But if you're bored already then you can stop reading. LOL

Dad has high blood pressure and is overweight (sorry dad)
Mom just has high cholesterol and is overweight (sorry mom)
(I swear I love my parents! Just tryin' to give a little info)
Mom's mom had coronary heart disease, COPD, asthma, CHF.
Mom's dad had heart disease, stroke, and heart attack.
Dad's mom has high blood pressure.
Dad's dad had high blood pressure, diabetes, and colon cancer.
So far all of my siblings are healthy.

Any experts out there know which direction to point me in? I'll appreciate it so much and I'll send you some candy in the mail! Thank you to anyone who even takes time to read.

[MomKaren]

I am certainly NOT an expert, but I do know that even a Chiari of 5mm CAN cause the symptoms you listed. Many doctors don't seem to think it can be related the only a 5mm herniation. Persevere!! Check out yet more websites for information, support, names of doctors that do recognize the symptoms!! Keep at it!!

[Braintoobig]

Thank you so much for reading!
I feel like a lot of my symptoms can be explained by the chiari but the wacky lymph nodes and the weird lab results just seem so odd.
I just wonder if the neurologist is going to send me to a hematologist, a cardiologist, or a neurosurgeon and I'd rather not have to wait until March 3rd to be told to go somewhere else. This is getting so expensive! I'm a full-time college student using my student loan money to pay all of these co-payments. I'm trying to go to medical school myself but this stuff is making it so hard!

BLAH. I guess I'm just impatient :(

[Izzy66]

I also have chiari 5mm Hereniation(well thats what it was a few years ago). I also work with several neurosurgeons and I have asked lots of questions through the years. Although its a small herniations and most doctors don't consider treatment for that small of a herniation, it can cause several symptoms. But for the chiari there is really no treatment instead of pain meds or surgery.

The rest of it I really don't know anything about. Good luck.

[Braintoobig]

Thank you very much for the reply! A lot of those have been ruled out already and I didn't post the normal results because they aren't as exciting to read LOL. So far these things that have been ruled out:

I have been to two ENT's, one of them being a chiari specialist neuro-otologist. He ran an electronystagmography(ENG) and an Auditory Brainstem Evoked Response (ABR). Everything was normal. The only abnormal thing is my hearing loss in one ear due to a head injury 6 years ago.

I also had a cervical spine MRI (which I forgot to mention) which showed multi level disc desesication and two buldging discs at c-5 and c-6 and there was no neural impingment. I'm currently in physical therapy for that and it's awesome!

I have not been checked for intracranial hypertension yet and I vaguely remember my neurologist wanting to do a spinal tap if there was no where else to go.

I have had STDs ruled out. My OB was the first person I went to since the nodes were swelling in the groin too. I'm HIV negative, the neuro tested for syphllis and that was also negative. IT BETTER BE NEGATIVE! Or else I'd have to have a long talk with my husband!

Rheumatoid arthritis was negative, and my ANA test was negative. Lupus anticoagulant was negative.

I haven't been checked for any sort of cancer or TB. My last negative TB test was 3 years ago. I had a CBC w/ diff, TSH, Lyme's done a few months ago and all was normal.

I am aware the the EBV can become a chronic issue and that may be another thing to follow up with as soon as they r/o all the other stuff.

Sooooooooooo yeah.............. weird huh???

[Braintoobig]

I have been leaning toward seeing a hematolotigst but haven't made that decision yet. What do you guys think about that?
Or is an infectious disease specialist better?

[Braintoobig]

Hi! Sorry! Me again. I feel the need to mention that I haven't had a fever in over 20 years no matter what I get sick with. Last fever I had was when I had pneumonia as a child. I always thought it was weird but never was concerned about it. I only mention it because this whole mono/infectious disease stuff seems really insignificant when someone doesn't have a fever.
buuuuut I don't know! That's why I'm here. I'm lost :/

[Braintoobig]

I still don't have answers. Does anyone have a suggestion on what kind of doctor to see next? I'm so tired of feeling sick :( I'm starting to get really depressed.