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Visit to the sleep specialist

Jun 14, 2010 - 4 comments

Well, I did it. I saw another neurologist even though I had sworn them off!

This was different, though. Dr. Trock is a sleep disorder specialist. I tried to make an appointment with a pulmonologist for my obstructive sleep apnea, but it would take forever to get in to see the one who is recommended by everyone at work (the hospital). I was referred to Dr. Trock, who is a Pediatric Neurologist and adult/child sleep disorder specialist.

I liked him immediately. He has seen my son, Hunter, for his migraines and I see his orders all the time at the hospital for video EEGs for pediatric patients. Everyone at work says he's marvelous and I have to agree.

In my pre-appointment paperwork I said nothing about my recurrent weakness and other neuro issues (except migraines), but of course, it all came up and out. The medications I'm on are a huge tip-off that I have neuro issues. We talked and I really down-played any symptoms I have and I think that made him more curious.  I really spoke only of what was relevant to the sleep apnea I have. (I need to be reevaluated due to my newer airway weakness and weight gain due to steroids.)

When I talked about the left-sided weakness and how I think it affects my breathing during sleep, Dr. Trock was fascinated. He admires my current neuro, Dr. Leuchter and wanted to know what Dr. Leuchter says about all my symptoms. I said he just isn't sure and is still trying to piece it together with all my fairly normal testing.

He took EXCELLENT notes and we talked at length about sleep apnea and the sleep study he wanted to perform.  THEN he gave me a pretty good neuro exam. After my appointment he printed off all the visit notes he intends to send to my internist and Dr. L.  Here's some of what they said:

Decreased energy level. Hearing loss is noted bilaterally. Has joint pain. Tremors. Hearing diminished bilaterally to voice. Reduced vibration (128Hz) bilaterally in the feet. Head tremor, Intention tremors in both upper extremities, an intention tremor in both lower extremities.

REFLEXES: 3+/4+ biceps bilaterally, 2+/4+ triceps bilaterally, 3+/4+ patellar bilaterally, 2+/4+ Achilles bilaterally. Dysmetria of both upper extremities, Dysmetria of both lower extremities, Romberg positive (falls backward). CANNOT TANDEM
This is the meat and potatoes of the report being sent to my docs.  There are lots of diagnoses he used to validate giving me another sleep study. Lots of notes about the sleep apnea issues. But, for his purpose, I was very pleased with the visit.

The thing which startled me was how much worse my exam has become. My tremors are pretty bad. I have denied lately how difficult it has become to do silly things like apply make-up, to write more than a few sentences on a pad of paper......

I cannot do the 'knee to shin' test AND I CANNOT TANDEM WALK. AT ALL.  When I attempted to and nearly keeled over, Dr. Trock stopped me and very gently put his hands on my shoulders to make sure I didn't fall and kept me from trying to complete the task. It seemed very kind. This startled me as well.

I am getting worse and even more startling is the fact that I am at my best right now. THis is the new 100% for me. I am at my new best. I feel very sad about this and a bit at a loss. I am grieving. I have lost so much. SO much. I cannot walk very far without it zapping all my energy. I feel for the first time in my life: Disabled. Unable. Not ABLE.  Quite sad. I think of all the times my husband and boys offer to help me with menial tasks and tell me they can do things FOR me. They see it, too. I have deinied this. But I can ease into living with this.... It will take some prayer. I can do this.

The wonderful truth I have learned from working in the hospital as an admissions clerk is --- I have it SOOOOO good! There are SOOOO many who suffer so much. I am lucky and blessed beyond belief. Thank you, God!

It is truly wonderful to have my job and see just how fortunate I am. I can get through this. I probably will get worse. That seems to be the course and I am not regaining strength and skills as I used to. But I STILL have it sooo much better than so many who come to the Neurology Unit at the hospital...Or the Oncology Unit... I see the 'frequent fliers' at the hospital come back again and again. I feel so sorry for their suffering. I am blessed; I AM fortunate. And I am still sad for myself. I think it's only natural.....

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198419 tn?1360245956
by sllowe, Jun 15, 2010
Hi Honey,

What a thorough Dr. this is. I'm so impressed. I hate that you are declining, but admire your will and outlook. We are truly blessed despite our limits aren't we. Adding on to your thanks to god for that.

I will send more prayers up but be very specific this time to ask for a cause to show itself!

220917 tn?1309788081
by Momzilla, Jun 15, 2010
Thank you, Shell.  You're very sweet and a really good friend.


1215483 tn?1306259455
by sickofsick62, Jun 26, 2010
oh, my i've been thru the same experiences. this year i've noticed that i have a lot of balance problems and my tremors are worse in my head. my memory is worse too.i've had a ramp put in,so i can use my walker/rollater.but walking too far hurts my polycystic kidneys.then the double curvature scoliosis is another back is inoperable.and now i have extensive stenosis.making me fall alot.,so the docs have ordered a mobility chair....yippee.48 years old,and i look like nothings wrong with me.yay.i know how it is to feel down on yourself. but, we must carry on and set an example for the young people as they are watching to see how we handle all this. but, in my house i allow myself a good cry, or an extra long nap. that helps. we musnt forget to love ourselves in spite of the disabilities.
i will pray for you.
your friend,

1382889 tn?1505074793
by jujuminx, Aug 17, 2010
Oh Mom,
What a great attitude you have!  There are so many things we cannot change but keeping a positive attitude is well within our control.  Kudos to you for focusing on the positive and having compassion for those less fortunate (and yes there are a lot of people suffering out there).  Prayers and blessings in abundance to you my dear traveler.


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