The kicker is the symptoms are getting worse.  Mobility has become a huge issue the last two weeks and the numbness that radiates from the back to the front is more prominent making for finding a comfortable sitting position impossible.

So I guess I should be excited, thankful, something on the positive side of feelings but I can’t say I am.  I feel a little more dread/apprehension than anything positive.  Why? Part of it is ego, vanity, etc… something about the type of treatment I suppose.  The other part is still not understanding the diagnosis, theory or connecting any of the little understanding I have with the symptoms and the treatment.

Yes, when I asked the doctor about sarcoidosis and how it was linked to Transverse Myelitis she without hesitation confirmed neurosarcoidosis.  The problem with accepting that is I went years accepting Transverse Myelitis (probably easy to do since I rehabbed myself to the point where I thought I beat it) and thinking I had a clue what it was and how it was itself a single diagnosis.  Do I have TM or neurosarcoidosis? I have not read anything that claims they are the same thing, do I have two issues causing my symptoms?

Admittedly the methotrexate seems to be kicking my butt, adding discomfort without reducing any of my symptoms, and I am getting very tired of dealing with the symptoms but there are certainly more questions than answers.  Hopefully with this new treatment some of that can be squelched.

Oh yeah on the upside the medical coverage as well as my employer are much more open to everything that is going on… that is a Christmas present all in itself.

Thanks for listening/reading.

So tests done, time to see the doctor.  Admittedly I am jaded walking in but that is more about the whole process that has unfolded.  First thing I was asked about was the methotrexate.  I told the doctor that I really didn’t experience any changes in the few weeks that I took it.  I was quickly corrected, rightfully so, that I was supposed to continue taking it.  Hey the pills ran out at the same time as the folic acid I was prescribed (to counteract the effects the medication would have on my already suspect blood chemistry) and I thought doc said it would take a few weeks for it to start showing results… Okay so I received a new prescription of methotrexate and the “refills” part was emphasized and I am back on that.

One of my other priorities is try to narrow down a nagging questions.  Much like the “likely” diagnosis, I was unclear as to how this was the cause of my TM (Transverse Myelitis).  I had seen references to neurosarcoidosis but I had to ask if when the doctor was saying I had sarcoidosis she was referring to neurosarcoidosis or was general sarcoidosis triggering my immune system and the TM was  a by-product (I have to rely on the respiratory specialist because the neurologist was quick to wash his hands of my case when sarcoidosis was mentioned – yes that bothers me alot).  The doctor did confirm she was thinking my condition is specific to neurosarcoid but of course there is no definitive statement.

I am on the second week of my second course of treatment with the methotrexate.  I don’t believe there are any positive changes, but it just gets the mind more active trying to find things.  Every new pain or sensation triggers the “hmmmm that’s new, maybe that is my nerves relinquishing and now I can feel the pain” that ultimately leads to “no, just more fun”.  There are times when my back is killing me and my leg seems to function better and vice versa but eventually I am left with this is just the symptoms.

Oh yeah I started this with a note about a treatment.  So me receiving correspondence stating it was approved doesn’t really mean it was approved.  When the doctor’s office called to confirm they were told it was still pending.  So more waiting…

The time in between has me reflecting back and trying to remember how this progressed and more importantly remission.  As I have researched this “likely” culprit the common belief is remission can be three to ten years.  I don’t recall it being that long with the first onset, but then again there was a near fatal episode of DIC which was also attributed to some form of immune system deficiency.

Of course thoughts teeter on both ends of the spectrum.  Right now, the back pain is much less severe but there are other sources of pain.  Most mornings the left leg seems to operate so much better (or should I say closer to normal) but by the afternoon I start tripping over my own feet again.  Every new sensation or a sense of less sensations makes me wonder if that’s a sign.  A new pain in the leg and I think “hey I can feel that, maybe that’s a good sign” which is normally short lived as by the end of the day the pain has returned to the now normal levels I expect and the leg is a useless limb.

I am really noting this now so that if this goes into remission and then returns I have a general timeline for future reference.

Maybe a more useful example then… I mentioned the Groups capability.  Create a group and then pin that group to your home screen.  The Live Tile again comes alive.  The tile will keep refreshing with the contacts photo (which comes from Facebook, Windows Live or the custom picture you may have assigned to the contact in your phonebook).  Additional information that the Live Tile presents is their activity stream posts (Facebook, Twitter, etc…) and if a member of the group has sent you an email it will indicate that as well.

Obvious other uses, at least ones that work well is the Weather Channel application (just wish it updated more frequently).  Maybe to save data usage (I don’t believe XBox on the phone connects to XBox in the background), but the XBox Live tile has some live-ness with it’s animation to occasionally show your XBox Avatar.  I just wish it would show online friends and/or game invites.  I remember back when Halo 2 was the must have game, if a friend invited you to play, you could be notified whether you were online or not via Windows Live Alerts.

I think as more apps get updated or developed for Mango the functionality of Live Tiles will expand but even in this stage it is a nice feature.

Example:  An app that I had looked at previously and found it lacking was recently updated.  One of the updates is the use of the Live Tile.  The app is Hockey Tracker which helps me track NHL scores.  The previous version worked but you had to access the app to see the information.  This version offers notifications for each goal and final score for the teams you select.  Where it is really aligning itself with glance and go is the newly added live tile interaction.  When you pin a team to your home screen, the live tile flashes with the score and the progression (time remaining) of the game.  Now if only Windows Phone provided a screen capture function so I could show how it works.

No the steroid prescription isn’t technically a treatment but more of a pain medication and not something that will help curb or cease the condition.  Without the steroids, things are unbearable at times which is a funny contradiction as they come with some side effects I don’t really like but it’s a case of the lesser of two evils I guess.

I have held off on calling my doctor and asking, maybe a little negative but I have been through this and really would rather not be disappointed again.

Also something to point out.  I had noticed that my phone’s connection to my home wifi was frustratingly inconsistent.  Even after NoDo and Mango, there were times when I had to restart my wifi router to get the phone to connect.  None of my other wireless devices had an issue but they rarely left the proximity but I had been disappointed with the signal strength I had observed when just outside of my house.  I have grown leery of the Linksys products since Cisco took over.  I recently upgraded my internet service and was offered a chance to use their wireless access point or use my current access point (are you listening UVerse?).   I opted to try their device.  The phone now connects right up every time it comes into range and where it would lose connection as I walked out my garage it seems to stay connected a decent distance down the street and the wideband is a definite upgrade.

So, I noticed while picking through my collection of podcasts on my phone, I noticed there was a subscribe button.  I had to try it.  At first it was a pretty cool function but after a few days I am very suspicious of the accuracy of its content update.  A few concerns I have:

• Content Management: I added 32GB to my Focus so not an urgent one for me but for those with the 8GB it shipped with it has to be a bigger issue.  With the tethered method, the Zune software detected that a podcast entry had been listened to and it removed it from the device.  With the new system, once you subscribe to the podcast on the phone it no longer synchs via the Zune software (at least that’s what I have seen).  With the on phone podcast aggregator, once you tell it how many items you want to keep, it keeps them even if they have been listened to.
• Update Frequency:  I have matched up my phone collection to my Zune (computer) collection; the phone is never as current as what is on the computer.
• Connectivity: Now I have had issues with my phone connecting to my Linksys wireless router and more inclined to think it is the router more than the phone but I have seen the issue on other wireless connections.  The phone notices a new podcast entry is available or I subscribe to a new podcast. The marketplace shows there are downloads.  When I check to see what downloads are in the queue they all say attention required.  I turned on the download when on wifi only to save myself from going beyond my monthly data limit of course.  If I disconnect from wifi and connect right back to the say wifi network the downloads start flowing.
• Format:  On more than one occasion a podcast episode finishes downloading and when I try to play it, the phone tells me it is not in a format it can play.  This is really puzzling since they are podcasts listed in the phone’s marketplace.

I think this is a really cool feature and I hope that in some further testing these issues are resolved or can be simply explained.  Scenarios such as travelling, having this feature could eliminate the need to install Zune on my laptop to keep my podcast episodes up to date.

The inclusion of Twitter and LinkedIn makes the People hub even better.  I wish home.live.com would restore Twitter as a connected service but it’s on the phone so moving on.  The new people hub is great for finding a contact to call or message (email, SMS, Facebook chat or Windows Live Messenger).  Additionally on the What’s New section, just a swipe from the listing you can follow your social streams, all without ever going to facebook, twitter, linkedin, etc.

A “feature” that was advertised in the group of 500 was “groups”.  I was not interested at all when I first saw that.  After setting up two groups, one for Family and one for Friends and then pinned it to my home screen, I have seen the light.   The Live Tile scrolls a marquee of their contact picture and any updates, such as a post on facebook, as well as the number of messages from anyone in that group.  On one hand I have a little disappointment about the lack of toast notifications based on groups, similar to the issue of new email in sub-folders (I will comment on the email apps in a future post), but if I were social and added lots of contacts to one of these groups I could see being overwhelmed with Toast notifications.

Much like the groups tile, pinning a contact to your home screen provides the same live tile interaction.  Additionally if you look at a contact, especially when you connect all of their accounts (facebook, linkedin, twitter, etc…) you can see all of their activity right from the home screen.  Opening the contact gives you a similar “What’s new” as the general one in the People Hub and additionally it has a new section labeled Pictures which pulls from Skydrive as well as Facebook. 

The socialness is very cool, at least technically as it aggregates all of these streams to include interacting (commenting, liking, re-tweeting) without using specific apps.  It also makes great use of the Windows Live Messenger stream.  Again a service I rarely use directly but it’s there.