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Neurology update...I may be doing graduate research in this field, ironically!

Sep 30, 2008 - 4 comments
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pineal cyst

,

Topamax



I saw my neurologist for the second time, this past week. He was surprisingly pleasant and amiable, unlike the first time around. Unfortunately, this didn't mean he knew what was going on with me...but I think he knows it's something neurological that "started the fire", so to speak, because he asked to see me again in 6 weeks, following the second MRI of my head (and pineal cyst).

I told him the 25 mg of Topamax wasn't getting rid of the headaches or intracranial pressure that I feel daily, and he said that while he would normally up the dosage, it sounded as though I was experiencing side-effects already at the lowest possible dosage. He switched my medication to Inderal, and said that this would help with my migraines and my resting tremor, which he called an "essential tremor" and told me he didn't know what was causing it. Little did I know at the time that Inderal is the same thing as Propanolol...I had actually joked with a friend back in June that I should be on Propanolol due to my fast heart beat. But my blood pressure is already erring on the low side, as it is, which worries me a little...and the fact that Provigil interferes with beta-blockers...oh well, my Mom ended up canceling my 5 month prescription that was mailed in to my insurance company's tel-drug program because they were apparently charging us over $200 for three months of Inderal...and I'm not even sure it's going to work yet! I'm going to get a new prescription from some doctor (anyone, I don't care), and then try it out for a month. I don't need more drugs, though. I need someone to figure out what's going on with me.

The neurologist knows something's up with the pineal cyst, I could just feel it and see it in his eyes. And because I knew this, I actually abstained from asking any questions like, "But what about my brain tumor??? Could it be causing symptoms?" It was almost hilarious...he seemed incredibly confused as to why the results from the blood test for myasthenia gravis came back negative. He visibly expressed bewilderment over my results being negative for that disease because I think he felt that it would describe all of my symptoms perfectly, especially the vertical diplopia (double-vision). I didn't even bother asking him if I could have normal bloodwork but still have this disease, or Wilson's disease. I guess that means I'm convinced it's the pineal cyst...or something else.

He referred me to a neuro-opthamalogist for evaluation of my vertical diplopia. I wonder if its caused by my slight astigmatism......my eye doctor said that my astigmatism wasn't even enough to warrant correcting in my glasses and contacts, so I'm going to assume no. I'd just feel really bad if I go to a specialist and discover that it's something silly and mundane like having an astigmatism.

I'm seeing a second neurologist tomorrow (today!), at the University of Pennsylvania--hooray for teaching hospitals! I'm actually really excited and anxious, because if anyone is going to be able to figure out what's going on...it should be this guy. And even if he can't figure out what's going on, he'll have colleagues he can talk to about my case over lunch, or something.

I also forwarded some images from my MRI and CT scan to my friend's Dad, who is a Pediatrician. Hey, it's another doctor, and he had to go to medical school at one point to learn how to read x-rays and the like! I'm hoping he can at least offer a general idea of how good or bad my images look, and whether or not something was missed on them since only one person (a Radiologist) has actually viewed each of them.

Today was rough because I didn't sleep last night...I just didn't feel like sleeping even though my body felt exhausted. I did a good amount of walking today, but after doing this, my headache worsened significantly, and I felt nauseous and pretty dizzy. Dizzy doesn't even describe it...I felt as though my head wasn't connected to my body and I just had a very sick feeling for awhile afterward. Maybe it was the movement of my head up and down while I was walking, or the fact that I was exerting myself. Most of the symptoms eventually went away, but the headache hung around, just like it always does. It wasn't very conducive for trying to solve differential equations, I can tell you that much!

I'm also experiencing weakness in the left side of my face. Not complete palsy, but muscle weakness, for sure. I still get a rash on my face, chest, and arms sometimes, and I've noticed that the whites of my eyes are...getting more bloodshot and yellow. My knees were really reddish-purple today too, like they didn't match the rest of my legs while I was standing, and the palms of my hands were spotting a lot more easily than they seemed to in the past...probably because I haven't slept much. And I'm still sweating profusely in certain areas (haha that's not meant to sound bad; I just didn't want to elaborate or be gross) and running a low-grade fever some nights. A sign of an infection? Maybe.....

I'll report back after my neurology appointment and differential equations homework are finished, later today!

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by TYBABY3, Sep 30, 2008
YES, I HAVE APROBLEM THAT I THINK IS NEUROLOGICAL BECAUSE MY HAND, STOMACH BACK ALL GETS TIGHT AND HOT. THEN, I TAKE THE DRUG NEUROTIN AND MY HOLD BODY FEELS COLD AS ICE AND MY FACE ALSO. I WISHED THAT SOMEONE OUT THERE CAN TELL ME WHAT'S GOING ON WITH MY BODY. EVER TIME THAT I SIT DOWN MY ABDOMINAL GETS TIGHT BUT IT'S NOT FROM THE MUSCLES IT'S SOME TYPE WEIRD DISEASE.

PLEASE RESPOND TO: TYBABY

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by sallyann27, Sep 30, 2008
awh good luck i hope someone can help. you were so helpful for me that i wish you the same. SA

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by Jules77733, Sep 30, 2008
Thanks, Sally Ann...it's just getting to the point where I'm actually starting to feel sorry for myself. And I'm NEVER like that, unless it's baaaad. I wish doctors felt the same compassion that I do when I try to answer question on here. To the neurologist I saw today, I was just another person he could s.u.c.k $400 out of. I'm just getting so frustrated and I can't control the way I feel any more than I already am. I don't want to be on more medications...I just want to feel better, but I can't feel better until I find a doctor who actively tries to figure out what's going on with me, and follows my progress closely. I don't care how many tests or how much bloodwork it takes; just do it! At least I would feel like I'm moving somewhere. Right now, I'm back to square one and I don't have another appointment for 6 weeks. I'm not sure how I'm supposed to keep functioning like this...I have a rough schedule (it's as light as it can be) and I can't explain to people that I'm really sick so they'll cut me some slack, because I don't even know what I have!

Arghhhhhhhhhhhh. This is not how medicine should be.

TYBABY3, I'll comment back shortly after I do a little research...a temperature problem sounds like your thyroid, pituitary, or better yet, hypothalamus--the part of the brain that controls your body temperature. The tightness could be a musculoskeletal issue, or like you said, a neurological issue. What's your history and your family's history? Any particular diseases run in your family, have you had any surgery, and what other medications are you currently taking? What business do you work in, and how old are you? All of this can help lead to a better diagnosis (though I'm not doctor, I'll be the first to admit).

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by EWAMIKI, Apr 07, 2010
I am neurologist from Polad and I have some asymptomatic pationts. And I have rare genetic symptoms one of them are from hypothalamus. If you had pineal cystis with symptoms you should have neurosurgical operation..Your depresion,panic syndrom is organical fom leasions. Polish dr House, but in  POLAND without assistans. I know only Yours  Mayo CLINIC. I am neurogist not neurosurgery.All good to you.

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