Dave's Journal

Wishing I would have kept up on this journal. Time to reboot and copy over to www.itguruwithms.com

 Blood drawn today for A1C test.  Got another cold/infection.  Can't wait for my Tai Chi DVD's to arrive.

Yesterday the FDA approved a new pill form drug to combat MS.

Time to start the Journal back up...

Change of drugs, treatments, etc. 

NIH went well...details to follow.  Thank you Debbie & Neal!

The staff at NIH was so friendly and nice, they made the day go great.

Nicole and I are in our Hotel room in Bethesda with NIH right down the street.  An early morning start at security should be fun!  Just got back from "The Tasty Diner" - we are out of our element...clearly.  Well done French Fries are the best.  Wonder how that will show up on my blood tests.

We meet with Dr.'s starting at 7am and the last appointment is at 1pm.  The drive down was uneventful...which is good.

More details to follow. 

Spoke with Hellen G. & Melissa G. for Dr. McFarland @ NIH.  (Joan was off today)  I'm scheduled for a battery of tests on 8/21 including another MRI which will be 3 times as long as my 1st one which takes more detailed slices from multiple angles/views.  They are going to check with the MRI techs to see if they can stuff my girth into a closed MRI.  There is a possibility of a spinal MRI as well as a spinal tap.  Blood work and medical exam will also be done.

I'm gathering all of my current Dr. info as well as the MRI on CD and faxing / sending to them ahead of time.

Vision fluctuates between 95 - 98%.  Heat still has an impact on the vision.

Keeping busy with home remodeling and the love of my life, Nicole.

Dave

Long time no update.

Things have been hectic but such is life. Still some vision impairment, but I'm going to get a 2nd opinion and go to NIH which Deb & Neal are in the process of arranging.  (Thank you!)

My family Dr. never called back to let me know if they could run the tests...I'm going elsewhere or not going at all as they will run the same tests at NIH.

Hot weather greatly affects the repair process and vision.  Trying to stay cool as I'm sure everyone else is during these 'Dog Days' of summer.

Took the script to my family Dr. this morning @ 7:30am.  They photocopied and said they would call me after they verified that they can run all the tests needed.  No call back.  I may need to go elsewhere to expedite the bloodwork.

New iPhone was released today along with new software!  I did not get one because of complicated AT&T contracts.  New software is great though.  It works on the old phone.  Way to go Apple!

The Dr. visit went well except for the fact that they never performed several tests they were supposed to.  This includes the Lymes Disease test which is what was primarily needed.  First they said they lost it, then they said that the lab never received the instructions.  The blood count, urine, sodium and a couple other tests all came back within normal ranges.

So now I have to go give more blood to get the 4-6 other tests performed.  I also received some information on a couple different types of treatments for MS.  Copaxone - daily injections, Interferon (a couple different types) - injections ranging from weekly or 3 times a week.  Of course this can't be determined until all the blood tests are complete.

Even though my eye is not 100% - the Dr. said that my vision could return / repair over the next 6 months and that further steroid treatment would not help.  It could also stay the same.  Keeping cool helps the repair process.  Overheating does not help the natural body chemical reactions to quicken the repair process.  When she looked into my eyes she could see minimal damage and minimal "white" scaring areas of the optic nerve which was good.  She also noticed minimal difference between the good eye and bad eye as far as reaction to light.  This was drastically different when she 1st examined me.  She suggested seeing the eye Dr. again as they would see more results with dialation than she could with her little hand / light tool.    So overall I'm frustrated with their lack of communication and completeness as far as getting the blood tests done.

And the beat goes on....

Vision slightly blurry still. Enjoyable weekend here. A couple of parties, good friends, volleyball, fireworks. Oh....I got engaged. Nicole said yes. I'll have pics up on a site shortly.
Renovation continues upstairs...today was busy moving furniture, clothes, etc. Muggy mowing outside but it's done.

Today was not such a great day.  I felt my vision got worse - like a washout.  Things were just not as clear as the day before.  Headache is back, but could be sinus / weather related.

Seeing the Dr. on Tuesday - I will be sure to let her know.

Dave

Everyone have a great 4th of July and long weekend.

Vision is still not 100%, but going to the Dr. on Tuesday to get blood test results and mention the vision.

Busy remodeling the upstairs...everything is all torn apart and carpet should be done today!!

D

Hey gang....things are going well.  I have been very energetic  these past couple of days.  Getting lots of projects done.

Eyesight is close to 100% - sliver of impairment in the field of vision.  I meet with the Dr. on 7/8/2008.  Called three times to get blood work test results.  No return call.

Have a great weekend!

Dave

Today was very good. Right eye going in and out of focus, but better and almost 100%. Slight field of vision blur. Steroids down to 1.5 pills over the next 3 days. Had good energy....but then again, this past weekend I was a house of fire with chores.
No word from blood test results despite calls into the Dr.
This medical Journal may not be updated as frequently, but here's the link to my personal technology blog:
http://blog.nepa2.com

Weekend was good.  Slight head congestion.  Vision is still around 90 / 95%.  Still some focus / blur problems.  Steroids almost done.  They are making me hyper, not much sleep needed.  Sunday I think I got more done in 12 hours than all month.  Drove Nicole nutty as I was 200% productive - cooking, cleaning, dishes, laundry, building new computer, work, Home Depot, etc.

When I lay down at night there has been some back pain, but it seems to be getting less and less.  I have 2 steroid pills left to take over the next 4 days (1/2 every other day).

Hung out Saturday with good friends and enjoyed Bruster's Double Chocolate Chunk Ice Cream.  It had good taste....wasn't peanut-butter, but I could taste the chocolate!

Not much to report.  Feeling better.  Vision not at 100% but feeling ever so close.

My vision has improved drastically over the last 24-36 hours.  Things are getting back in focus with some slight bluring around the outsides.  I'm halfway through the Roid-Off weening process.  Thanks to everyone for their help and concern.  Nicole and I made Peanutbutter chocolate chunk cookies last night, but they still taste like metal.  My favorite taste combination must return!

No word yet on the plethora of blood tests.

The morning is starting off great.  Up at 5am (a rarity).  Sun is shining, birds are singing.  Vision is at about 85%.  Weening off the Roids...

Thank you Nurse Nicole!

Vision is up to about 70%. Side affects of the drugs are subsiding but still yucky. Made it through a full day of work. Not much excitement there. Blood tests still pending. Calling this week. Can't wait till July's appointment. Driving at night is not good.

Not much energy today. Stomach and head issues are somewhat controlled by OTC Prilosec and Tylenol. I can feel Vision changing for the better even though its still blurry and frustrating.