Dave's Journal

Stomach feels like it was put through a cross cut paper shredder (forward and then reverse). Head still pounding. Nicole is taking good care of me.
Eyesight is still the same. Roid rage continues...

Thanks for the kind words everyeone and yes I am "roiding" out a bit, but trying my best not to take it out on my loved ones. Massive headaches & stomach / heartburn again today. Everything still tastes like metal including water. Getting ready for my Prednisone. Dr. said I should go get some Tylenol & OTC heartburn medicine.
Vision is still about the same.  I feel like the right eye is trying to come back into focus.  No pain in the optic nerve and looking to extremities.
Davey feels like crushing something - if I had the energy. Gonna try to take it easy this weekend. Ahhh....sleep.

So the 3rd and final infusion begins. Tagamet to start the juices flowing and reduce the heartburn and reaction. Solumedrol drip is in process. Feeling a little dizzy. They are paving / sealing the parking lot right behind the room where we drip. "All Construction is Good Construction"...especially when it's not concrete!

Vision is about the same, possibly getting better - can't tell for sure yet. Gonna relax and take it easy and try not to get Steroid Rage (yesterday was bad, but brought on by people being stupid at work). I mean come on - who doesn't put a subject in the subject line of an e-mail. If you want something done in 30 minutes and it is important, is it not important enough to fill in the Subject line, let alone call or go through the proper procedures of filling out a trouble ticket? Business professionals working for large corporations subcontracted by the State amaze me in their failure to plan and then expect others to pick up their slack. SLACKERS!!! I won't mention any names (Intergraph, Ajilon (Code stealers) and Behring Point.

Ok...off the soapbox. Breath Deep!

Dave

Feeling Tired & Irritable. Head is stuffy and feels like sinus pain. Heartburn is increasingly bad. No change in vision. Eye pain is still non existent including moving eye to extremes.

3rd and Final Infusion is tomorrow. Wondering when I will hear blood test results for everything. Appointment with Neurologist is not until the end of the 1st week in July.

Thanks for everyone's comments and support.
Dave

Woke up feeling a bit woosy. Vision @ 15% / 85% loss in right eye. Pain behind right eye and in forehead appears to be greatly dimished (Yeah!) even when looking to extreme corners of the orbit.
Arrived @ the infusion center. They pre-medicated with tagamet (cimetidine) prior to the solumedrol (Steroids). Could these drug names be any more difficult to spell?

Forgot to mention the free Wi-Fi and Networking of potential customers - especially when I whip out the Apple Mac and iPhone.

Had my 1st infusion of steroids today which went well.  They took blood prior to the infusion to do cell counts.  They originally told me 45 minutes for the drip, but the attending infusionist (Diane) told me that my 1st one would be done over 2.5 hours which it was.

I had a reaction (tight/heavy chest, flushing, sweats) after the high dose of steroids was almost complete.  They shut off the steroid bag & added Tagamet & Benadryl to the saline drip and within a minute I felt fine.  Finished the remainder of the steroids.  Diane asked if I was glad they did it over 2.5 hours instead of the 45 minutes (Yes).

Did not go back to work.  Went home and slept for about 90 minutes.  Had a nice dinner with Nicole.

I confirmed with Dr. O’Connell’s office that they were able to finish the testing with the blood drawn from Monday including the test for Lyme disease.  Results pending. 

Right eyesight is still about the same @ 15% vision / 85% impaired.  They think I should notice something possibly Saturday going in the right direction.  Pain in the eye and head has subsided, even when looking in extreme directions.

2nd & 3rd infusions are Thursday & Friday @ 7:30am.  A graduated decreasing sequence of Prednisone starts Saturday to wean me off the high dose steroids.  Damn, and I was so hoping to turn into Arnold overnight... 

I did not go to the infusion center today.  I called Dr. O’Connell’s office and spoke with her assistant this morning since I had not heard anything.  She said she was glad I called and that they wanted to run more blood tests.  I asked if they could just use what I had given yesterday and she acted like she never would have thought of that.  She is submitting for the following tests:

-Sedimentation Rate

-Rheumatoid Factor

-Align Tighter (sp?)

-ANA (which the Dr. assistant did not know what this was)

I asked when I was supposed to report to the infusion center and when the prescribed drugs were to be taken.  They said that they were waiting for a call back from the infusion center to make arrangements.  I asked them to call them back and not wait.  As of 3:45pm I have not heard anything.

The Prednisone is to be taken starting the day after the last steroid infusion.   The EpiPen is to be used if I am out and have a ‘reaction’.

The infusion center is:

Andrews & Patel

I met with Dr. Barbara O’Connell for a neurological exam and interpretation of the MRI from Friday.  I passed all the reflex tests.  She was able to study the MRI and make mention of multiple small pin points of “active lesions, pre-permanently damaged” MS spots.  She also indicated that the right eye was slower to react to her light tests and that the Optical nerve damage / inflammation clearly showed on the MRI.  She indicated that this is the initial sign of MS, but MS runs a wide range of little or no effect to the extreme deterioration of the nervous system.  Thank you GOOGLE.com!

Dr. O’Connell sent me for blood work as well today which is being done for cell counts & glucose tests among others.  She is arranging for the 3 visit IV steroid drip at an “Infusion center” in the next day or so.

Vision loss and pain in my right eye has slightly increased since I first noticed “something” that I thought was another sinus headache back on 5/30.

I am very optimistic over what is to come as this is very manageable and treatable.

Thank you to Debbie & her network of medical experts, Anne’s knowledge, research and guidance, all of your support and the Love of my Life – Nicole.

I will keep everyone posted.

Love,

Dave

Dr. Chotner's office performed a full eye exam including a field of vision test which I failed misserably in the right eye.  He noticed "folds" on the back of my retina and scurried around to make an appointment for an MRI @ 3:00pm.

MRI?  Oh goodie never had one of those before.  It was like stuffing 100lbs (yes I weigh more than that) of potatoes into a 25lb sack.

So the MRI was over around 4:45 (some half hour, eh?) - after telling them not to inject the dye into my right arm, they did it anyway and learned (I will teach, they will learn) and did it in my left arm.

Dr. Chotner got the Radiologist report and said I should go to Hershey Emergency room and get an IV drip of Steroids for 3 days.  What he should have said was 3 days in a row as an out patient, not 24 hrs. a day for 3 days straight.  Dr. Chotner also indicated that the Radiologist saw active spots of MS (Multiple Sclerosis) on the MRI.  Time for a Nurology appointment...

I did not get the IV drip as my Niece Anna was having a graduation party and getting her the Apple Mac Book Pro Laptop and eating dinner @ Bricco with most of the family was way more important.

Technology & Family 1st!!!!!!!!!!

Called Dr. Greber 1st thing Today.  He could not fit me in and probably did not have the right equipment to take care of this issue.  He set me up an appointment with Dr. Chotner @ Memorial Eye for 11am.

Called Dr. Greeber Today - Thursday since they had not called back.  THey took a message for him and he did not get back to me until 5:30pm.  He said he was booked, but might be able to fit me in on Friday and to call Friday morning.

!!!!!!!!!  Vision & pain worse !!!!!!!!!

Called Dr. Greber and left a message.

Offices closed!

Condition not improving.  Called Dr. Greber.  Phone call not returned.  His office is closed Wednesdays.  Yikes!

Vision not improving and headache and eye pain still resident.  TIme to call the eye Dr.

Woke up today with pain in my right eye and what I think is sinus headache.

Right eye vision is blurry.