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First supportive doctor's appointment today! :)


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Appointment with Dr. G today went quite wonderfully, if I do say so myself. I was just a tad giddy to have a doctor look me in the eye instead of keeping their gaze focused on a prescription pad.

I will say, he is pretty eccentric. One of the first things he told me was that he was NOT a P.A.N.D.A.S. expert. He said that he has diagnosed a few kids, & that he was adopted by the media/P.A.N.D.A.S. community by word of mouth. He admitted that other doctors knew much, much more than him. I got no written diagnosis though. He said the he only makes diagnoses when kids are left nonfunctional by their P.A.N.D.A.S., which at a time I most definitely was, but not so much now. He said that he wouldn't feel right diagnosing me over a decade after what we suspect to be the initial onset when he didn't see my P.A.N.D.A.S. when it was more textbook & more severe. This makes sense to me. I'm not mad about it.

Getting my medical records from Dr. Kovacevic "didn't make it on [my mom's] to-do list" while she was in Chicago, so we had no backup, which was more than a little frustrating (although I think we're even after I locked her keys in her car while her car was on & the AC was running for over an hour this morning...). I have an appointment to get bloodwork done Friday morning (Mycoplasma, antidnase-B/ASO titers, Lyme Disease & more), I'm making an appointment to get tested for group B strep (definitely not looking forward to that one), & I am scheduling a full polysomnography/recorded EEG. I was bitten by a tick when I was ten. He said it's not likely that it would by Lyme since it was in north Texas, but that there was no harm in testing. I asked about the Igenex lab & he said that you only had to worry about which lab to send it to when testing for Latent Lyme, which he wasn't looking for. I don't know too terribly much about Lyme so I didn't argue. Also, I HAVE had an EEG before. I'm having another one because he thinks that my Narcoleptic symptoms have actually been petite mal seizures & he doesn't understand why my last EEG, in November, was at nine in the morning if they were looking for sleep related Epilepsy. This made a lot of sense. So, I have an overnight one. I don't know what to think about the Epilepsy proposal, in all honesty. My last EEG showed "abnormal brain activity", but my Dad was laid off & I lost my insurance immediately after that. Once I got it back my symptoms had improved & I had already vowed never to go to that doctor again, so it was never looked into.

 

Also, my mom did go with me. She had to leave the room frequently to call locksmiths/insurance/whoever else in a desperate attempt to get her keys out of her car (which I have no one to thank for but myself), but for the most part she was there & seemed to be listening. More than once G asked her a question & my Mom just got a confused look on her face & said "Ask her.", while pointing to me. Dr. G seemed pretty impressed with all of the research that I've done, & that made me incredibly happy. :) When we were alone at one point he asked me why my Mom didn't seem to understand much of what we were talking about & I just told him that as far as the typical P.A.N.D.A.S. community patient-parent relationship is concerned, ours is reversed. If I want an appointment made, I have to make it, where as most parents are dragging their kids kicking & screaming into doctor's offices. Most often, it's parents up until the wee hours of the morning doing research & typing away on these forums & then simplifying what they find out for their kids. Not the other way around. It's unusual, but I guess it's just whatever. You get what you get. Dr. G handed her a paper about P.A.N.D.A.S. & she looked at him & said "I've read it all before. She's told me all of this before. I just don't understand it like you guys do." I told the doctor how long it took her to make the appointment & all he said was "Well, thank God you're you."

 

It also made me happy that before we left, he showed me everything he had written down, specifically the bloodwork writeup, & asked "Do you think there's anything I need to add?" Knowing that a doctor like that actually trusted my opinion on my own disease for one (instead of people brushing me off because of my age) felt so good.

 

Also, someone on the forum told me that he doesn't treat P.A.N.D.A.S. From what I can tell, this isn't true. He said that he is a strong advocate for antibiotics, especially Augmentin (which he has a poster for right on the door). He said that he is sparing when it comes to treatment just like he is when it comes to diagnosing, though. When I asked him about IVIG he told me that he has never had a patient who's received it, & although he does believe it brings results he thinks that antibiotics are the better treatment because they are so much easier to obtain. Hopefully after all of these tests I can get my hands on some of those! ;)

 

Just thought I'd give you all a little update. Hope everyone's doing well!

Edited by EmersonAilidh
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Hi,

I have to agree : Thank God you're you !

You are amazing !

 

Are you aware, that narcolepsi, autoimmunity and strep-infections seems to be related "somehow" ?

 

I read an article the other day, saying that there is increasing evidence, that it seems to be the case. Couldn´t find that particular article, but found this instead :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2717204/pdf/aasm.32.8.979.pdf. Maybe you can use this ...

 

All the best wishes to you -

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You never cease to amaze me Emerson! And I'm pretty sure you amazed Dr G too. I look forward to hearing about your blood test results and EEG as there are so many pieces to the PANDAS puzzle. Between you and Dr G I am hopeful that your mutual puzzle solving skills will lead to an effective treatment plan.

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"Well, thank God you're you."

 

 

Out of all that, this stood out to me. What an awesome response he had for you.

 

 

I have to agree!! There are reasons for everything aren't there? I am so happy you made some progress!! And I agree with Vickie too, very proud and very impressed!!

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Thank you all! :)

 

PANDAS_Denmark - I've never heard from anyone outside of the US! & yes, I've read that article. Thanks for sending it though! Narcolepsy runs in my family though. G said that he was leaning towards petit mal seizures because he basically said that it was "highly unlikely" that someone with a strep immunity problem could get another problem through genetics that COULD be linked to strep. I don't know if I worded that right, but he was basically saying that if it was Narcolepsy I was one incredibly unlucky girl.

 

Bloodwork gets done on Friday, WE get the results in three days (past doctor would never let me see my titers. He'd just say they were high), & then we have a followup appointment. Hopefully, if nothing else, I can at least get some Augmentin while we're working on other things like the seizures & such. I'll let you all know! For now, it's back to school shopping time. :)

Edited by EmersonAilidh
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Cyber-Dads, too! (Or maybe weird cyber-uncles you try to avoid at the family reunions?) :huh:

 

Keep fighting, EA. Vegas odds have you winning by a knockout!

 

 

All of your "cyber Moms" are very proud of you! I'm sorry you didn't leave with a prescription for Augmentin, but perhaps after those blood tests come back you will find some answers. We're all rooting for you, Emerson!

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Emerson,

 

Add me to your list of very impressed admirers! Just wanted to add - any doctor you go to is legally supposed to provide you with a copy of labwork you have done if you request it (well, you'll probably have to have your mom request it). Ideally, try to have them make you a copy before you leave the office - most of them will do it. If they say they'll mail you a copy, ask them how long & then keep on them for it. But frankly, any doctor's office that is reluctant or unwilling to give you your own info is probably an office you would want to avoid anyway!

 

~Grace

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