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New neurologist yesterday. :)


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Saw a new neurologist in Dallas yesterday. The appointment was basically just to say "Hey, this is what's up" & touch base with her.

She was the sweetest woman! She was from Iran. Our main objective was to mention the abnormal EEG, the fatigue, & my headaches (which have been increasing in severity & frequency as of late). First & foremost, she is P.A.N.D.A.S. receptive. Yay! I told her that Dr. K (via email) & a local psychologist had both told me they believed I had it & she basically said "With your history of strep & your symptoms it would be hard not to make some connection" but mostly focused on the individual symptoms present currently as opposed to the whole picture. Some might not like that, but at the time I'll take what I can get. We still have more to look into & do before any bigtime treatment options are considered. She looked over the EEG papers (LOVE having my medical records :D) & told us not to worry about them. She said that about 2% of the healthy population will have an abnormal EEG. I didn't feel like getting into it by mentioning that I'm definitely not a part of the "healthy population" but I already have another overnight EEG scheduled so I just didn't get into it with her. There were bigger fish to fry, I suppose. When we brought up the headaches she said she agreed with me that they didn't seem to be migraines even though my Mom has them. She coded them as "nonspecific migraines" for the time being though when she prescribed me daily Nadolol (increasing dosage for the next four weeks & then a plateau) to prevent the headaches & Maxalt to stop a headache in its tracks when it does come. I have been med-free for about a year & am normally all-too-skiddish about taking pills (good luck even getting me to take Advil or Tylenol), but these headaches just keep snowballing & have been keeping me from going to school. Normally I refuse to take meds without first looking into the cause, but I have some hunches & I just cannot deal with these headaches. I don't care if we're just throwing pills at it for now. During the physical exam she touched my shoulders & I just automatically teared up it hurt so bad. NO doctor has ever taken the time to squeeze my shoulders, no matter how much I complain about them. We mentioned Dystonia to her & she just kind of nodded her head. Now that I think about it she really didn't seem to acknowledge it much, hahah. She said she didn't believe Lyme to be at play here, but added that she wasn't knowledgeable & could offer no alternative explanation at the time. She, like the old neurologist, did suggest that ADHD & BiPolar Disorder were both probably present & recommended that I see a psychiatrist. Just... Not even gonna get into how I feel about therapy right now, hahah.

 

Besides the shoulder thing she did SO many things in the physical exam that I had literally never once seen before. She made me catch & throw a ball. She made me walk around so she could hear my ankles popping. She made me touch my nose, then her finger, nose, finger, nose, finger... Just all of these new things. She asked TONS of specific questions that I had never been asked before, as well. She recommended some new brain imaging since the last time I had that done was an MRI in 2006, also.

 

I was not about to leave another neurologist's office with nothing more than prescription pads yet again though. I asked her why she was prescribing headache medication but didn't seem to suggest much regarding anything else. I'll admit, although she made a fantastic first impression by giving me something other than a tap with a reflex hammer & a light in my ears, I was still a bit uneasy until I asked this question. She said that unlike my previous doctors, she planned on tackling what she admitted was a pretty daunting & complicated situation one thing at a time. She didn't want me to get stuck in the situation that I was fiveish years ago where we had no idea which treatment was doing what for which symptom. She told me to see a Lyme doctor about the Lyme (October 18th) & the polysomnography doctor about the fatigue/Narcoleptic symptoms & EEG (They're scheduled soon but don't remember the date..), then come back to her in December when I had been taking the headache medication long enough to decide how I felt about it & when I knew more definitively about the Lyme. She suggested the polysomnography anyway (didn't recommend further EEG but I just want to make sure), but we already had the appointments so we just kept them with another doctor. I figure if two is better than one, than three couldn't be a bad idea, haha.

Only one day into the Nadolol, have yet to need the Maltax (cross your fingers), but I am optimistic about much more than the headaches.

 

 

 

 

I have been staying up soooooo late lately. :/ Bleh. Been bad about that. Slept through every single class today (which was my first full day of school since last Wednesday), dropped my pencil everytime I tried to work, & smacked my head on my desk in first period. I just feel worse everyday. I think that part of the reason I'm so optimistic is that part of me really believes that something has GOT to give. I'm just so tired of feeling like this.:/

Goodnight, all. I hope you're doing well. <3

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your mom was there too...

i am glad that both of you were able to hear what the doc had to say...

and glad you at least found someone close who won't just shrug off pan/pits

i am not a doc..but maybe your bipolar, other issues are tied to the illness.

 

when i don't feel good...or hungry.....everyone should be very careful :ph34r:

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Hi Emerson,

yay for the headache medicine!

 

Have you had a recent strep test? (culture, maybe titers). Is anyone willing to put you on an antibiotic trial (but you might get that with the Lyme doc anyway).

 

IMO your adhd and bipolar symptoms are from PANDAS until proven otherwise.

Edited by EAMom
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I'm suprised you never had these things done before with a neurologist, esp catch/throwing and the nose/finger thing. Did they do anything like tell you three words at the beginning of the appointment and at the very end ask you to repeat those three words back? Another one is asking what year it is and who the president is. Well, at least this one is doing some basics. I hope you continue to be happy with her!

 

 

Besides the shoulder thing she did SO many things in the physical exam that I had literally never once seen before. She made me catch & throw a ball. She made me walk around so she could hear my ankles popping. She made me touch my nose, then her finger, nose, finger, nose, finger... Just all of these new things. She asked TONS of specific questions that I had never been asked before, as well. She recommended some new brain imaging since the last time I had that done was an MRI in 2006, also.

 

Edited by Vickie
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SarahJane ~ I've gotten back on schedule!!! Sleeping in my bed is so much better than on a desk at school, hahaha. Thank you! I'm excited. :)

 

FixIt ~ Absolutely! I believe so too. It's hard to imagine having P.A.N.D.A.S. & then a SEPARATE BiPolar Disorder. I mean, I'm pretty unlucky, but I would want a trophy if my luck was THAT crappy.

 

EAMom ~ Once again, the line between P.A.N.D.A.S. & Lyme is beyond blurred, but I definitely think, scratch that, know, that the "BiPolar"/"ADHD" are tied to either or both. Whoooooo knows, really? My ASO titers were low (can't remember the exact number...) in August & that was the last time I had them run. AntiDnase-B was 85, also. That was about two months after the last suspected strep infection that the Madre never took me to the doctor for. Third negative titer/strep test in general EVER! :D Go me. It's the small things in life. :)

 

Vickie ~ No, she didn't do the three word thing (I've SEEN that but never had it done to me) but I didn't bring up any cognitive issues. It's so overwhelming when a doctor asks "What's going on?". Everything is going on!!! Listing all of them would take the whole appointment.

 

 

 

 

 

ALSO! I've been a bit post-happy lately & don't wanna clog up the forums with my little ramblings, but guess who got her Lyme diagnosis?? I'll give you a hint. It's starts with an E & ends with a Merson. & she's kind of sort of ecstatic right about now. Thank you, ART muscle testing! Calling another referral tomorrow to see about... Oh. Ya know. That one thing.... Treatment??? :D I am quite the happy camper.<333

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