Quick Post – Reinvestigating Diagnoses that were left unconfirmed

Well the last few days have been, shall we say interesting. I am still trying to take it all in as the “event” is still ongoing. It all started when I needed a colonoscopy and it was prevented by the surgeon based on my prep blood results. Flashback as this has been going on for 19 years now, back to when I was going to get minor surgery for rotator cuff repair. I was placed on prednisone to get the numbers up. Eventually I did have the procedure and wow I felt better, from the time the prednisone started, than I have felt in the years that my TM resurfaced. Had the procedure, was back to my normal workout schedule and feeling great. So then I needed to start stepping down on the prednisone, so another blood test. Within an hour of having the blood drawn the doctor was calling me to tell me I needed to be in the ER. Huh? I feel great (I hadn’t noticed all of the bruises)! My platelets were not just low, they were zero. WTH!

Well a few days in the hospital and my platelets, while still low, were at a manageable level. Left the hospital, no steroids or other treatment, just an order for more blood tests and an appointment. Had a very rough weekend, where the bruise was started to really hurt/bother me, tired as heck and just felt like crap. Get my blood drawn. Went to bed early that night because I was dragging. Woke up to see a voicemail, it was the Hematologist telling me he needed to see me in the infusion clinic. He came in to meet me on his day out of the office. My platelets were basically back at zero. I received a large dose of prednisone (yes feeling much better) and told to stay at that does until further notice. Received my first IVIG infusion. I am still not sure about that, as the Remicaide infusions really seemed to be just a money grab for the hospital system in my case.

Now some interesting notes I have taken in all of the information that has been told to me… Sarcoidosis appears to be out. Yes it effects the lymphnodes but so does CVIDS and ITP. IV Prednisone sucks, but the oral form … I can see it being addictive. I am feeling positive as the Hematologists I am working with seem truly interested and excited to help me, but I have been through this before and still worry that once things settle down and I am no longer an interesting case, I am also not on their radar but we will see.

More to come…

Devices Advancing, even small steps

So this one probably ties in with my health stuff as well as my recent technology upgrade.

When researching the 1520 there was a news article about an app that would track your steps. I didn’t see the need at the time. How does this apply to anything? When Sarcoidosis hit this time it really wiped me out. Between the discomfort, energy drain and working conditions I really had to make a conscious effort to focus on not stopping.

I got a FitBit flex, and while it works there are some flaws in the whole concept.  Aside from the fact that the company couldn’t keep enough replacement bands in stock (hmmmm wonder why, maybe because they ripped too easy) and the fact that shortly after releasing the Flex they came out with a new one with all of the things they left out of the original, such as counting stairs and showing the time. Some of the limitations are simply the mechanics of doing it, there is only so much detail you can gather. Granted the arm swing is the most logical, so a device hanging on your wrist makes sense. The issues I found are:

  • You have to be careful of how tight the band is otherwise it doesn’t move and therefore records nothing.
  • It doesn’t record activity like weight lifting very well. Bike riding, as long as you put your hand on your thigh as you peddle it works well but not very practical.
  • Carrying something, where you arm is not swinging, while walking doesn’t record anything.
  • Pushing a shopping cart in the grocery store triggers it to record sleep mode for some reason.

None of this is for detail tracking so those are just the limitations and just the general tracking and visual reminder is handy.

So now I can get a similar function with my phone. Considering all of the sensors a phone has that certainly makes sense. I know there are other apps but most of them seem centered around running, and running is still something that is really not possible for me. I can see the same impracticalities appearing but one less device seems to make sense. So I installed the app from Nokia Beta Labs and gave it a few days to see what it would do. Without expecting it to be perfect, I have to say it is a well designed app, although it does not have the back end data/web services of something like Fitbit, and simply works.

Live tile shows current data, app is well laid out to give a nice representation of the activity, and the system adds what appear to be some timely notes (too soon to tell).

Live Tile for Nokia Motion MonitorNokia Motion Monitor AppNokia Motion Monitor App - app interjected notes

It has only been a few days so it will be interesting to monitor this app as well as compare the data against the data my Fitbit collects.

Big Phone–Lumia 1520

So, I heard all the chatter about the 920 and “that won’t even fit in your pocket” (oh how wrong) but I just went from the 920 to the 1520. No doubt this one doesn’t just slide into your jeans pocket but it does fit in the pocket. The 1520 is substantially lighter than the 920 despite the major difference in size. Oh you want to see the difference?


So on the left is the Lumia 920 and to its right is my new Lumia 1520.

So aside from the size difference… the 1520 is lighter and the edges are rounded cleanly and comfortably. I love my 920, so much I kept it and plan on using it as my media player, especially for times when I don’t want to risk my phone, like working out, riding a bike, mowing the lawn, you catch my drift. I had been looking for a 520, oh how I miss my Zune, but hey keeping my 920 is a much better option. Even with no cell service, the wifi is great, I can run the apps and more importantly use the great media player and all of my XBox Music content.

First things I would like to point out about my 1520:

  • So I got my phone at the AT&T store… figured being there would be great for the initial install and sync of data since I was in their location and on their network. Bad idea. Their guest wifi is way too saturated and LTE signal abysmal, go figure.
  • Going from the 920 to the 1520 was more than a device upgrade. With it came GDR3 and the new Nokia firmware. Personally for me this was huge. Little details like giving contacts a ringtone, not just for calls but also for text messages, something I had voted many times for on http://mywindowsphone.uservoice.com/ ; the Glance screen shows new messages, emails and other notifications. Just some real nice enhancements and much sooner than I had come to expect considering how long it took to get GDR2.  I still have to go through http://mynokiablog.com/2013/08/09/wp8-gdr3-features-list/ but being able to close tasks from the multi-tasking screen is nice.
  • Performance – there is no doubt this is an upgrade. All aspects of performance are markedly better, as one would expect when upgrading. Seems self-explanatory but isn’t always the case when upgrading.
  • Button layout… that the back button and the search button, the search button more importantly, are more to the center of the capacitive bar is huge. In just a few hours it was easy to see how less frequently I will be aggravated when I inadvertently hit the search button when simply picking up the phone and rotating it in my hand.
  • Accessories. This issue I am torn on. Considering how often a new device is released I can only imagine that developing accessories is something that is just not feasible. By the time a manufacturer designs one, and puts it into production they have probably already heard about a new model. The lack of accessories is an issue in my mind. For starters the Qi charging is not in this phone so there go several of my already purchased accessories. I am not a fan of putting a case/shell on my phone, but a case so I could clip it on my belt would have been nice.

I continue to be a fan of this platform. With the Lumia devices it has grown even stronger. Even the apps issue, not something that concerned me from day one, is improving in large measures. Now I have to do some more testing with this device.

New Post

Catching up… so I haven’t been here in some time. I tried another blogging service and just gave up.

So, still in my second bought with Sarcoidosis. Changed providers because despite what we hear, my experience is the hospitals are worse than the insurance companies in the whole healthcare debate/debacle. No real news, until recently, but at least I did get a doctor who could explain how we went from Transverse Myelitis to Sarcoidosis. In short it comes down to lymph nodes as Sarcoidosis is the only immune issue that affects the lymph nodes. I did get some medication to help with the symptoms, but in truth the side effects were worse than the symptoms.

Not my first rodeo with this so, accepting and adjusting to the symptoms and just pushing on.

More recently, while the symptoms were about the same, I lost a ton of energy and then a massive weight loss (30 pounds in about a month) kicked in. I went to see my Primary Care doctor. Had all of the normal blood work done and a few more, no results that weren’t expected. The doctor scheduled me for a procedure, did all of the prep and was waiting for the procedure when the surgeon said that based on my very low platelet count he wasn’t comfortable with performing the procedure.

So off I went to see a Hematologist. Obviously with each doctor, the conversation regarding my history is long and generates interesting response. Now I have a new acronym… another? Oh well, I might as well accept it and see where it goes and since the surgeon and the Hematologist both mentioned it maybe there is something to it. ITP http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura 

Windows Essentials–Photo Gallery Tags

So with the name change, from Windows Live Essentials (2011) to Windows Essentials (2012) came some confusion with two of the products. Those products being the video and picture file tools.  Both were named with the Windows Live moniker previously and in many cases you could find the application in the Windows Live folder. With Windows Essentials, these files are named straightforward albeit confusing, Movie Maker and Photo Gallery.

One of the reasons I am even posting this is a friend mentioned that they downloaded a product so that they could organize their picture files based on tags. So the obvious question was why another piece of software? With Photo Gallery you have a great tool to manage your media files, to include tags (in addition to geotags and ratings) and you can search your collection by those tags. While it’s no Photoshop replacement it is a handy utility that should be installed on windows7 and windows8 computers.


Install Photo Gallery using http://get.live.com

Windows Phone 7 – Lumia 900

So it’s been a few months now so I figured I should post.

To get it out of the way right away… Windows Phone 8 announcement and it’s demoting the Lumia 900. I find it odd that Microsoft and Nokia spent so much marketing a phone that they knew was going to be lessened. I did hold off on getting the Lumia knowing Windows Phone 8 was near, there were conflicting reports of whether or not the Lumia 900 would or would not run Windows Phone 8. My Samsung Focus was wearing thin and when I saw the lame second version they came out with, combined with the AT&T pricing for the Lumia 900… I got a sweet phone. My reaction to Windows Phone 8 not running on Lumia 900 was disappointment. Not anger and I do not think the Lumia 900 instantly became a brick. Between the software Nokia continues to roll out and improve and the updates Windows Phone 7 is slated to receive I can see this being a viable device for quite some time.

So with special pricing and the trade-in value for my Samsung Focus I spent around $50 for a new phone. Out of the box the device looks great, feels solid without being heavy and the display is great.

The button placement (all of the buttons on the same side of the device) was an adjustment (Samsung Focus had Power and Camera button on one side and the volume controls on the other) but I found the placement more ideal especially when in landscape mode watching video podcasts or other videos. The buttons seem to have a slightly audible rattle if you pay close enough attention, an odd annoyance considering the quality of the build and a basically seamless device.

I put a case on it originally but it really just detracted from what is a very cool looking device and the screen and case have really held up well to normal wear and tear without a cover. The body and screen seem near scratch proof, but they have this silver medallion to advertise the Carl Zeiss lens and this does not enjoy the same benefit as it seems to scratch very easily.

The camera is a little disappointing, but I prefer taking pictures with my DSLR. Nokia’s camera extras software, especially the panorama mode, add some great features and the camera is adequate in a pinch.

Call quality (who uses their phone for phone calls?) is very good. The sound for ringtones and alerts is very good which was a big upgrade from the Samsung Focus. Volume for music and video is very good (oh I wish the Zune premium headphones had a microphone).

Wifi issues were fixed almost immediately in a fix rolled out (amazingly AT&T didn’t hold that back). Interestingly enough I cross into several areas where LTE coverage is available.

As expected the phone was much faster than the Samsung Focus I had been using.

The charger that comes with the phone is great for charging the phone quickly, oddly you cannot order one as an accessory.

In general this is a very nice phone and I can only hope Nokia sticks to the same form factor for their Windows Phone 8 device.

Of course the biggest problem continues, AT&T and their decisions to not update the platform. Nokia rolls out exclusive apps and a few (Nokia Counters) require the latest version. While other carriers have rolled out Tango, no signs of it on AT&T.

Treatment-All Clear

So after a 140 minutes in the MRI tube (completely counter productive – your back hurts so you have to sit on this god-awful bench for over two hours) I guess the results indicate I am all healed.  The MRI tests were ordered after several infusions to determine if the treatment was working.  Listening to the PA (I still don’t have a doctor after the original physician who started me on the treatment left the hospital) all of the tests indicated there were no signs of the lesions or other indicators.  I find that all a little odd, if not infuriating, since as I had told her yesterday my back still hurts, my side (around the spleen) still hurts, I still have the same abdomen discomfort, still experiencing the same evacuation issues and oh yeah I still can’t walk or maintain a normal gait.  To which the PA asked how was Physical Therapy going which spawned a 10 year flashback… I am not in Physical Therapy, wouldn’t that be something you doctors order/prescribe.

So while I should probably be celebrating I find myself simply dumbfounded. Granted I still have suspicions about the diagnosis, but it’s hard to argue “why do I still have the same symptoms if I am healed?”.  I guess it’s back to the self-prescribed physical therapy routine.

Treatment–Round 5

So five infusions done as of today.  Interesting thing was I noticed one of the symptoms, the paralysis in my left leg, was improving.  During the two episodes of what is now diagnosed as Sarcoidosis there is the flow of responding to every change, a new pain here a spasm there, and you think this could be a sign of progress but after months you start to just ignore them. 

This time however I was being keenly aware since the increase in my weekly methotrexate dosage was kicking my butt and I wanted to see if I could adjust to it before I asked my doctor about changing medication or lowering the dosage.  Also cognizant that my leg would feel a little better when waking up and a little more when I was home for the weekend.  With that in mind I monitored the motion and pain/numbness level closely. 

As I have grown to expect after a few hours at work there was some change but still the ability to take normal strides with my left leg was much improved since almost one year ago.  Certainly not enough progress to consider the term remission but a pretty positive sign.  Yes I would love all of the symptoms to go away but some symptoms never truly ceased but if I can pick one of the symptoms to recover it would be the use of my leg.

Treatment–3 Down

So after stacking (two infusions only two weeks apart) I start the monthly Infliximab infusions.  After the last infusion (2) the P.A. had me get blood work done, the results were good, well as good as my blood counts can be, so she increased my methotrexate. 

In the last ten days or so the pain has increased and the use of my left leg worsened.  Luckily this is not my first time with these symptoms so I am more patient with all of it.  It is a little unnerving that I have been off the steroids in lieu of this “better” treatment and the symptoms have gotten worse.  I know I have to be patient but I also know how much “practice” and unknown goes with the sarcoidosis diagnosis, not to mention my lack of confidence in their diagnosis.

Of course I am asked if I notice any differences from the first infusion to the most recent, but when I say no, the standard response seems to be “it will take 5 or more”… then why ask? oh well.  Something the P.A. mentioned this time really caught my attention and not sure how I should take it.  I guess she was breaking down how the medication works but her words were “Infliximab does a great job of melting the lesion down”.  While that sounds promising, it was surprising.  From what I read and was told there has been no mention of the medication and it’s effect on the lesion.  Still uncertain what the methotrexate was prescribed for, I am even more uncertain what the treatment plan is now.  I will have to do some more research and then call my doctor again. 

I know from the previous onset, the symptoms will lessen to the point where I can start my own rehab.  That is my mindset and keeps me from getting too worked up one way or the other at this point.  Yes I am aware that it might not go into remission this time, matter of fact odds are strongly against that but to stay positive I am just looking forward to a time when I can get back into daily workouts and getting back to some form of normalcy.