No one has a CLUE what is WRONG with ME . . . HELP - Open to All Other Health Topics Message Board

Robin@Home · 10-01-2005, 12:06 PM

I am scheduled for my 1st Neuropsych Exam in two weeks. I have already had an MRI (5/04), EEG (5/04), MRI & MRA (6/05), 24 EEG (6/04), 48 EEG (9/05), and a full cardiac work up.

I'm at the end of my rope. Somedays I just do not want to get out of bed - I'm so tired of feeling bad.

5 years ago I started having these small (5-15 sec.) episodes where I wouls lose my vision would fade completely and then it would fade back in.

2 years ago these episodes started increasing in freq. 6 months ago I started having other problems with these episodes. Each episode causes me to stand perfectly still in order not to fall, I lose my vision and hearing completely for about 15-20 seconds on avg., then everything fades back in. Along with having these from a few a day, to one every other day, I am now having dizziness, nausea (which then becomes vomiting), blurred vision, lights in vision, visual distortions (dorways/furniture aren't where they appear - per the marks all over my body), numbness of right arm and sometimes leg, balance problems (tripping up the stairs), speech problems, and the BIG ONE, cognitive problems. Lately I have a sharp pain in the back of my head, then in an hour or two my right arm aches and then becomes numb (and turns a little red). The next day will be bad cognitively and my balance and vision get distorted. Somtimes this lasts days, sometimes I'm fine ina few hours. In the past two months, I've had 2 good days.

Within the last 1 year I have been diagnosed with REM Disorder, RLS, and Narcolepsy. Somedays I can't get out of bed. Whatever "this" is could be causing the narcolepsy - so I may not really have that, it could be a side effect. The REM disorder is real - ask my "other half" - I broke his nose in my sleep!

They are treating me for Migrain with Aura - many of the Meds make me very ill. My verteran Neurologist (an ambassodor of the US Board of Neurology) gave up on me and sent me to Jefferson U to. I'm so special I get to see a three year resident.

Why I am worried - The resident gave me a small picture test (which I did notice said cognitive "stroke" test. Next thing I knew I was talking to a staff neurologist that told the resident this was beyonds his training and to schedule a neuropsych exam.

I think they are looking at TIA or strokes or something similar as related to migraine aura - but isn't TIA or a stroke an emergency situation? Why would they make me wait two weeks for the Neuropsych test?

I am so tired. I am tired of medications, trying to keep my full time job, trying to take care of a house . . . . I guess I am having emotional trouble with this.

I feel like the only people I have on my side is my God, and my Sleep Specialist - who just so happens to be the coroner (isn't that interesting).

I just don't know what to do anymore.

DX- · 10-02-2005, 01:05 PM

Robin, bless your heart!

You have truly been through the ringer on this one.

We can't provide answers here, but we can steer you in some directions for more help.

First -- consider sharing your post on one of the boards that might be the direction your newest doctors are looking at: Brain and Nervous System? or even take a stab at epilepsy or any board that is neuro in nature. Not that they are the answers for you; rather, the people who suffer with those maladies can let you know if they have shared symptoms with you.

If your doctor hasn't asked you to keep a journal, then begin doing that. Every pill you take, every feeling you get -- track everything. See if you can discern any patterns that will help them try another test or diagnose you. Take the journal to your next appointment.

Online research: use some of the keywords you've used here: headaches, migraine, blurred vision, cognitive problems. Anytime there is a phrase of more than one word, use "quotation marks" around it because the search engine will keep those words together in its search.

You can begin with any of the beginner websites listed in the sticky at the top of this post. Yours is such a tough one, that they might not be too useful. I suggest you try out some of the more physician-oriented sites (doctorsdoctor.com, medline.com, harvard med school, etc.) Even use google or yahoo, even though you'll probably have to slog through hundreds of articles that don't relate at all. If you come up on a journal article that looks hopeful, but you can't get ahold of because you'd have to pay for it, ask your physician if s/he has a subscription to that journal. If not, check with your local library system to see if they can help you.

Best of luck. Hope you'll find something helpful here. Keep us posted.

Lostdog · 10-03-2005, 11:39 AM

Migraine with aura is a generic term for several types of migraine conditions.Some of which are rare.Do a search for a condition known as "Basilar artery migraine".See if the symptoms match up to what you are experiencing.Good Luck to you! I have been where you are-9 yrs of it -after 5 years I was dx: Basilar artery migraine(BAM) but it did not fill the whole puzzle-now I am having a dx:Lupus strongly looked at & finally think I may have found some complete answers.I wish you all the best.

tiramisu08 · 10-03-2005, 08:53 PM

hey there i suggest if you`re out of things to do now, set things straight. Go get a full body scan. It will show what ever you got inside of you that it so confusing. It will target from the top of your head to your toes. After what you diagnosed get things focused and make sure you get the right treatment. Just do it.

Robin@Home · 10-04-2005, 03:16 PM

Tirasumi -

A doc has to write a script for that don't they? The docs at Jefferson dont seem to give a thought to anything I suggest. Maybe my slep doc can write one - I'll ask him tomorrow I see him at 9 am. He is ready to pull me out of work. I know I'll have a hard time getting disability, even though I pay for it out of my salary every month as part of our benefits.

I have a lot of praying to do for God to provide. It will be hard financially with little or no income at all.

Lostdog -

I've been looking at Lupus also. Iknow someone that has it - so I know how close to home it fits.

I will look up the Basilar artery migraine right now.

Thanks all.