Need help figuring out what this is called

DX-

Robin,

yes -- I remember that you have an entire host of symptoms and you're having problems with a diagnosis. Incredibly difficult situation.

Here's a suggestion which will probably take you a great deal of time, but at least you'll feel like you've got your arms around the situation better. And, when you visit the next doc, you'll have something to show him/her.

Set up a spreadsheet for yourself -- a graph. Down the left column, list all your symptoms, test results, anything you DO know. Across the top, begin to list possibililities. They might be things that have been ruled out (although, I hate to tell you this, just because one doctor says you don't have something doesn't mean you really don't have it). Other possilibies are things you haven't been tested for, or suggestions other healthboard posters have made -- whatever.

Now go to any of the medical websites AND/OR just use your favorite search engine (google, ***, whichever) -- and begin plugging in combinations of the information you have. For each of the possibilities, input a YES or NO next to the symptom. For each of the symptoms, decide whether it's relevant to the possiblities. As you do this, you'll begin to find some new possibilities, too -- and those are things you can talk to the doctors about.

It may be an ongoing project as you continue to meet with your doctor(s) -- but hopefully you'll end up with a "bingo!" moment where it begins to come together.

Please let me know how this works. I'm working on a book now, and have provided this idea to a handful of people, all of whom have had some success with it. I hope it works for you, too.

And one other -- very random -- thought. Have you been tested for Lyme Disease? I've just read findings of some major neurological problems from tick bites that happened years ago that people weren't even aware they had gotten -- all attributed to Lyme Disease. Remember -- I am NOT a medical professional.... it's just a thought.

Keep us posted....

[email protected]

I'll start my chart right away - and Lyme Disease will be on it. However, the vision loss espisodes date back 5 years - not sure if that fits in with Lyme Disease.

I'll take any help I can get. Along with any prayers. My next doctor is a combination Neurologist and Sleep Specialist - so at least I will have someone that can guage the two and how they are crossing over each other. And he is the Medical Director - not a resident!

Thank you so much!

[email protected]

I also had an idea - it makes the spreadsheet big - but usng grouping helps with easy viewing. I've added a colum for every month and each day under it, and am marking the number of time I have each of the symptoms under the days. This was I can make a seperate chrt/graph and see if there is a pattern anywhere.

DX-

great idea, Robin...

Keep me posted!

Foxbluff

I'm wondering if you have started taking a new medication. I ask because I get zzzzzzz sounds in my head when I'm on Prozac or Zoloft. I've been on and off both those meds for years and it finally dawned on me that I only get that soft buzzing noise when I'm on one of those meds! I don't know if it's the same as yours but mine is like hearing the night sounds of insects & tree frogs from a distance. At least, it's like the night sounds from the fields and woods of VA. Best of luck...

[email protected]

Well, as an update, the Elavil and Concerta together were causing me all kinds of problems - talk about being revedded up! My heart rate was up pver 130+ bpm. I have since been taken off the concerta and just yesterday have seen the Medical Director at Penn U. He is taking me off all my meds and in 4 weeks we are starting over. He told me that there was no way to diagnose my multiple and complex issue while switching meds like candy - I agreed!!! He also agreed with me that I should have an MRI of my neck and spine - which was never done. I feel like I am finally in the right hands.

I'll keep you all posted.

DX-

Robin,

What a smart doctor! I hear that on occasion -- that all those drugs just throw off the discovery of what something really is --

And your confidence will make a difference, too.

Good luck!

justdivin

II had something similar to what you described. I call mine re-verb's or verbs. Short for reverberate. Mine was a shock or neural sensation that would travel through my nerve passages I liken the feeling to set of symbols. when together and instead of feeling the symbols energy in my hands I will have a internal vibration to my sensory neurological system. It was not painful, but very uncomfortable. I could get the sensation when I turned my head or was touched. I have only experienced this when coming off antidepressants.