Value opinion

[lbeyerl]

Going to Duke definitely made a difference for me. It was there (with fresh sets of eyes) that I was able to explain everyhting I had been going through, and enough time had elapsed that my symptoms were a lot more recognizeable.

The doctors really empathized with me and my family and assured us that something was definitely wrong, it was not in our heads, and that an abonormal single fiber emg was a great step in the direction towards getting an answer.

I say, it is worth one last shot right? And after you can rest easy and know you did EVERYTHING you could.

What really helped me was writing out a list of every symptom i had, with dates of when things started. I also wrote out a list of labs i had already had done, and brought copies of all of my medical records.

Best of Luck I will be praying for you!

 

[awieleba]

Thanks again,

I have begun the HUGE process of gathering my records and I think that I will need a trunk! I had all those other issue's that had me in the hosp 3x. CC told me to bring everything done in the last year. I laughed to my self and cant wait to ask the neuro if it is the most he has ever seen! lets see.....ct scan of abdomin, ct of head, ct of chest, 2 colonoscopies, eeg, emg/ncv, muscle biopsy, mri of brian & cervical&pelvis, x-ray of my entire back and hips, ultasound of pelvis, ultrasound of liver, bladder, spleen, kidneys, and ekg, oh and a echo, and 70 sheets of labs and blood work from every specialist on the planet! Granted 70% of that is from my stints in the hosp and my elevated everything and trying to see what was up. and my osteo arthritis diagnosed.

They said on the paper work to bring the 'actual' slide from my muscle biopsy stain not just paper work? Do places keep those? Seems strange carrying a piece of muscle in my purse...gross. They said not just paper work to these but the actual films...
I have to hunt down all these mri's and x rays? and ultra sounds and echo's? I think I better call see what they feel is the most imortatnt. My hunt will wait till tomorrow.

Again thanks for the support. and a Big hooray for blue cross and sheild...never denied or questioned anything! And I even got approved in Oct. for life Insurance policy. At the best level?what?!

april

 

[crystalkk]

April,

They like to look at actual films, something could have been missed.

I would definately bring the slide of the muscle biopsy.
I know you can ship muscle biopsies to John Hopkins for a second opinion.

I have learned one thing, test results are only as good as the person reading them or doing them.

 

[planningguy]

If your various mri's, ultrasounds, xrays, etc where performed at the same hospital/medical group, it shouldn't be too hard to get them all at once. Our radiology clinic even burns them onto a disk with a stand alone reader so you can puruse them yourself if you should wish.

Another strategy would be to ask the medical professional coordinating your case to request them all. As for the muscle biopsy... wow, that's cool in a weird way. Maybe you can have it made into a keychain

Take care,

Robert

 

[crystalkk]

Robert,

Like one of those ones that you look into the little hole to see the picture. It could be a new fad. (LOL)

 

[rose]

April,

for the biopsy, try contacting the lab that actually processed the biopsy, and should have your slides stored there. You can give them your credit card number right over the phone and they will fed ex it to the cleveland clinic for you. That way you know its there, and should take some of the leg work away. The mri films you can pick up from where they were done and carry with you to the appointment. I guess you could have them faxed too, but it doesn't seem as critical as getting the pathology to them in the correct manner.

good luck, its exciting to have hope you'll be having some answers by this time next month.

Robert... it never would have occurred to me to have a key chain made, how funny (only you!)

 

[lydia]

Hi April,

Just a self-absorbed comment regarding taking your MRI/Brain Scans and writing everything down. Forgive me, I can't help it, I have to rant:

For my 2nd neuro I created a gorgeous one page matrix, where I lumped symptoms together by similarity down the rows and had an 18 month time frame (split by summers & semesters) across the top of the columns. I input brief descriptions in many of the cells. I worked hard on making it concise and not overwhelming; crafting just the right (or should I say "wright") language . When the fellow started taking the history I told her I had already organized it all. And I produced my matrix with quite the dramatic flourish (what can I say, I was very pleased with it). She literally glanced at it without touching it and I swear she rolled her eyes or raised her eyebrows...one of those rude dismissive facial expressions we all know when we see. I couldn't believe it. I thought, well when the "real" neuro comes in, he will look at it. But he didn't. It just sat there an inch or so from his hand and he never even looked at it (and that took me HOURS to put together). Geesh!

And then I had brought my "normal" MRI and my "abnormal" Brain SPECT slides and photos, respectively. She (the fellow) said, "we don't need that" pointing at the MRI cd, and then the real neuro said about the SPECT photos, the ones that were interpreted as my having widespread active ischemia and global brain impairment, that "we don't even bother with those..." When I asked "then why would I bother getting one done, why was it even ordered (by previous neuro)?" he replied, "I guess they have to pay for their fancy machine".

So I hear the other posters giving you advice, advice that I was given as well...and I tried to do it right, to be my own advocate (when I know I suck at it), blah blah blah and to what end? Take an anti-depressant and get some acupuncture. OMG.

Sorry...had to put it out there. I hope your experience is much better than mine. Oh shoot...I am remembering your neuro's comment about not teaching you....and I am feeling even pissier (is that even a word? You get the point!)

Going to go have a beer.

Goodnight!

Lydia

 

[awieleba]

Lydia~

You are so funny! All you can do sometimes is have a beer or a wine and let it go, it works for me. I understand what you say about writing out the symptoms, they dont mean anything unless you have a bad test or they see something blatenly obvious! I think that they are good for our own personal viewing and understanding. I wrote out a quick one in the car on the way to the specialist and she did look at it but it did not make a difference. It seems some doctors are irritated if we try to understand and research what is happening to us. I think that it is good and bad. 15 yrs ago I had a real bad spell of something (weakness and aching and balance) They never fond anything (well EBV) and it went away. If I would have had a computer and googled it, wow....who knows what I would have thought I had. It was good in away to not know anything.

Rose~ great idea with biopsy, you always have such helpful tips! You are such a 'mom'! I mean that as the highest complement.

Robert, maybe I will get a key chain tag. I have not had one since i was in 6th grade and had a rabbit foot clipped to my jordache jeans! anyone else remember that?

My turn to go have a glass of wine......

 

[crystalkk]

Jordache jeans and rabbit foot keychains- how could I forget..

Enjoy the glass of wine!

 

[awieleba]

and who could forget those 'feather clips', I bought one and put that on my jeans and hair. It turned out later in my teens that I figured out they were 'roach clips'! My poor parents bought them for me because they had no clue either! I am glad that I am more in tune and been through it all in my younger years, poor kids wont be able to pull off any capers! (wait, does the fact that I just said 'capers' take me out of being in tune and cool? Yea, I think so)

 

[brendapals]

Oh, the memories...
The jeans and the rabbit foot key chain, some of you may be too young for this one:

Going to the sewing stores and getting some kind of "yarn" that we would wrap on our "boyfriends'" big rings so the ring would fit a smaller finger. After a few days, the "yarn" would get all fuzzy.

Almost as much fun as these damn oval 8 finger thingies I got today, and of course, they are too big, maybe I'll find some of that yarn!

 

[awieleba]

brenda,

to funny, I think young girls will always do that with boys rings!

I use to take paper clips and undue them and put them on my teeth and tell people I had braces?! Who does that and who see's that and believes it, I was a wierd kid and I wonder my boys are so 'spirited'.....like mother, like son.

 

[lydia]

April, I used to fold tin foil and put it over my teeth for "braces"...I wanted them so bad...but no I had perfect teeth :-(

Lydia

 

[awieleba]

Lydia~

OMGoodness, I thought I was the ONLY one on the planet that would of thought to do that or actually did! Too funny, I never needed braces either. I wanted glasses too. And I wanted a broken arm with acast, my sister had one and got alot of attention with it. So, having middle child syndrome My best friend and I tried to break my arm. I jumped of my swing, jumped of the house (one story), had her run over my arm with her bike and nothing..nadda! If you tell me that you tried to break your arm then that would be do,do,do,do,do twilight zone forsure or soul sisters...yea, I was bored as a child. No TV watching back then, outside all day causing problems when the world was safe.

 

[rose]

About that class ring.... I used this method, where you take one of the small rubber bands (like for the braces LOL) and did this slip knot thing-y so that all of the excess ring was held up away from the finger, which was cooler (weather-wise ~ I lived in Miami) I didn't "get" to have braces, but my brother did, and I used to rob his rubber bands from him to use for the ring. I had not thought of ANY of that in ages!

April, I just read what I'd posted before, and realize there is a typo, I meant to say that you could have your mri films fed-exed as well (I wrote faxed - duh)

.... so did anyone embroider on the knees of their jeans, (or butt) when a hole started? I ended up with one pair that had this amazing array of of butterflies and flowers, peace symbols. I had those jeans for so long, and it took the seat of them just giving way before I had to retire them. This of course predated buying jeans that already were worn with holes