An observation while waiting

Since contracting a case of shingles I was taken off methotrexate.  Since I had taken my weekly dosage the day before this seemed like a small precaution.  It’s been two weeks since that whole episode took place, and it would seem despite my curiosity of how, the methotrexate was actually helping despite the side effects.  This week the source of pain, centralizing in the middle to lower part of my back and radiating from there, seems to have returned to it’s original levels of pain (in short excruciating).  In general the pain was an after thought compared to my mobility and some internal issues that the pain was a secondary thought.  So, maybe what seemed an illogical treatment plan might be beneficial.  I guess I will know more when/if the infusions start next week.

Treatment Delayed

Well I should be talking about any effects of the new treatment.  Sadly I can’t.  During the holiday break I got a case of shingles.  That made for a less than stellar week off and then a few days of work.  The January 5th appointment was postponed due to an active infection.  Granted my concerns about treatment and the diagnosis just not seeming complete may have been a catalyst for this outbreak.  However I do think there is some irony in the fact that when the doctor put me on methotrexate (as well as the infliximab) one of the cautions would be the impacts it would have on my immune systems.  So it seems a little odd that because of a side effect they knew about, they have chosen to hold off on treatment.

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.

Treatment; All Set

Well a month after receiving notification that the treatment plan (Infliximab) was approved, the doctor has all the approvals.  So early next year (in 8 days) I am set to begin.  The infusion group called and set it up.  While the course of treatment is monthly, the first two infusions are 14 days apart, something they call stacking.

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.

Diagnosis – First Follow-up

So before I even got to the doctor’s office, my new health care provider approved the treatment that Anthem initially balked at claiming it was experimental.  With that in mind I figured this appointment was to set that treatment into motion.  I was scheduled for chest xrays and a spirometry.  The x-rays I understood as that would give the doctor a picture of what if anything has changed regarding the indications they are using to say I “likely” have sarcoidosis.  The spirometry is an interesting test, neither painful or uncomfortable, just more taxing than you would expect.  I don’t understand the purpose of this test.  Yes, I know Sarcoidosis more frequently affects the heart and lungs, but I have not had any symptoms with those functions.

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…

Pondering in the Interim

So, I have been without treatment, to include the steroids for about a month now.  I imagine I will get more steroids after my upcoming xrays.  That will be in the interim as they re-submit for the treatment previously denied.

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.

Windows Phone 7 – Live Tiles

Okay so the Live Tiles is a nice feature that was their from the onset and really helps with the premise of “Glance and Go”.  With the Mango update came an upgrade to Live Tiles.  A simple one, and maybe it is not Mango specific but I don’t recall it being a feature, is the Pictures Hub Tile.  In the past you could pick a picture to use as the background for the Pictures application and it did become the Live Tile image for the Pictures tile.  While using a picture as the background there is a feature for shuffling the background image.  Turning the shuffle background on, taps into the pictures you have added to your favorites.  The background image now cycles through the pictures in your favorites album.  The shuffling background goes right to the Pictures tile on the phone home screen.  While this might be a useless feature it is pretty cool and a nice demonstration of how live tiles can be used.

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.

Treatment – Still Waiting

So, I did the course of Methotrexate (100mg a week) and a full week has passed since.  No real difference in the symptoms that existed before which is disappointing but not really unexpected.  The side-effects of the medication really didn’t have an impact after the first week.  Last week I received a note in the mail that the respiratory specialist has scheduled an x-ray, respiratory test and of course an office visit weeks from now.  Getting it in the mail is a little unsettling as it wasn’t predicated with any conversation that might outline the purpose and why the amount of time between medication and testing.  Having been through all of this I am pretty sure there is an easy to predict reason … the amount of time allows the medication to run it’s full course and the testing will be more accurate in determining the results if any …  Two issues, none of the previous diagnostics have been able to construct a firm diagnosis.  The “enlarged nodules”, that have been pointed to and is the primary reason sarcoidosis has been tagged as the next “you likely have” (in the past it has been Hodgkins or some form of lymphoma and my TM was attributed to an early form of MS when I first showed symptoms), have been there for quite some time.  Why this is frustrating is probably the lack of treatment, and more specifically the steroid treatment. 

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.