Jessie's doctor appointment

susiestar

Roll With It
I got a call Tues afternoon about 3 from Jessie's neurologist. He is going to be out of the office for her appointment on July 1. They could get us in Wed am or in late August.

Of course we took Wednesday. He was running late but actually came in himself to tell us he would be about 10-15 mins longer. I was rather surprised because on past visits he did almost nothing himself except type on his computer.

This office has no paper charts. It is all done on computer except a couple of forms. I like this because the doctor actually looks at past notes rather than ignoring them.

We were able to clear up many of his past assumptions but not all. He still puts all of his belief in the "evaluation" given by the "therapist" who spent less than 3 minutes in a room with us and 6 other doctors and students.

He did believe that Jessie had been in a wheelchair long term on our past visit. She wasn't. She had fallen more than a few times in the days before and could not put weight on her knees or one ankle. It is hard to use crutches when both legs are banged up. I was glad he realized that the wheelchair was because injury and was for a day not for always.

She had a 20 minute "blank out" on Monday. thank you came to get me because he needed the bathroom and she was in there and didn't say anything when he knocked. He used my bathroom and I checked on her. She was staring into space. No response when I spoke to her, when I shook her, nothing. I lifted her arm and it just fell back down. I had to steady her because it shook her off balance. There were no other symptoms of a seizure or of a panic attack.

The doctor still wants this to be anxiety. Says no way was it a seizure, but it was a panic attack. It sure didn't look like any other panic attack she has had. She hasn't had one in quite a long time but I remember them pretty vividly.

You could have knocked us both over with a single feather stroke when the doctor asked if we had been to Dallas to see the movement disorder specialist. This is the same doctor who SHOUTED at me (in front of a nurse, Jessie and 5 medical students who all looked totally embarrased) that there was NO WAY that she had a movement disorder!!!!

He sent all of her records to a doctor in Ft Worth and his office is going to make an appointment for her. Since it has gone on for a year and NOTHING has made much of an improvement, since things are getting worse not better and since the therapist thinks things are causing the anxiety and not caused by the anxiety, he feels it is time to see this specialist.

FINALLY!!!!!

While I hope and pray that this goes away all of a sudden, I am pretty sure it won't. Having the chance to see someone who knows what they are talking about makes Jess and I both hopeful for the first time in quite a while.

The neuro actually told us that he knows nothing about movement disorders and really cannot say if this is or isn't one. He is a migraine specialist and usually only treats migraines. I wish he had said this before, but it wouldn't make a difference. We still couldn't have gotten into the other doctor with-o a referral from a neuro here and none of them were going to do that.

I just wanted to let you all know the latest. He did take her off of some medications that were not helping and wrote all new prescriptions for her. We don't have to see him until after we see the new doctor.
 

Mattsmom277

Active Member
Well this IS a positive development! And truthfully I felt relief for you when I read he was a migraine guy. This means his lack of specialty in areas that can help your daughter might be clouding him into his past issues about it all being "anxiety". Please tell your daughter that for over 3 years I saw a ton of docs and was in ER more than I count, and had periods where I literally couldn't move or walk, had to be carried for basic functions, and often heard the "anxiety" possibility while I was screaming inside my head and wondering when the bejeepers will someone GET that something was sooooo beyond okay. But getting into the docs who can test for concrete things, led to some ruling out things and then having to send me to another specialist etc which is the proper way of medicine. Test the obvious, if not, work from there from easiest possibility and into less likely, until we found an answer. It took just that one doctor to say enough, you're going to xyz specialist, to start me on the right path. Even though it was several specialists and tons of tests that all turned up nothing, it was NOT for nothing. It ensured we didn't jump to a conclusions when it was something simpler, and finally led me to the right doctor and right tests to tell me what I knew from about 6 months into the start of the entire mess, that I had MS.
I do think this is the start of a path to answers. And if this movement disorder guy isn't the one to provide THE answer, ruling out a movement disorder would mean him having to figure out what else is possible and sending you to someone who is a specialist for that, and that means yet another step towards a solution.
I'm so sorry she's still struggling. It can't be easy.
 

DaisyFace

Love me...Love me not
Susie--

I'm glad to hear that you are finally headed away from the "anxiety" explanation. Hopefully, this new specialist will be able to get somewhere--soon!

FWIW--the "blank outs" you describe sound EXACTLY like seizures. A family member has a seizure disorder...and I have seen him stare into space...absolutely oblivious to everything...many, many times. I cannot believe a neurologist would call it just a "panic attack"!
 
M

ML

Guest
I'm glad to hear we are finally moving in the right direction! Wow, she's been suffering like this for a year? Bless her heart. Please hug her for me. ML
 
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