So I am still in the middle of a re occurrence. NeuroSarcoidosis, Transverse Myelitis, whatever it is it knocked me on my butt literally. I have slowly progressed from using a walker and wheelchair to a walker and a Frankenstein like unassisted walk. I am in Physical Therapy and learning a great deal and making progress.
Sometime right before this hit, I had a problem with my Microsoft Band and gotten return approval for a replacement. A great deal of time has passed and Microsoft has discontinued the Band, which I think is very sad. I loved that device. Granted when I went from WindowsPhone to an iPhone a great deal of the joy was killed. Those reasons were mostly the “smart” part of the device, the activity tracking and the associated web service were still exceptional and I will miss them.
So as I mentioned I am in Physical Therapy and I started to feel better, at least at times. I want to monitor this, gauge my progress, push myself. Like my Lumia devices I found you could do this with an iPhone but making sure I always had it in my pocket was less then optimal. Even with the FitBit app you can create a device that uses the iPhone sensors. Don’t get me wrong this still served the purpose but I was looking for more.
Microsoft Band is not an option and I am no marathon runner, heck I have not been able to run a 5k run since the first onset over ten years ago so I don’t need a high end device. I did some shopping and I found myself back at Fitbit. Yes I have to admit that I looked at the Apple Watch but I am nor ready to throw down that kind of money and not being a hater but the feedback I have encountered indicates to me that it needs improvement and I am certain it will improve over time. I received a Fitbit Blaze and it is a nice device but I still prefer an actual wristwatch and I have several, I was looking more for a device I could wear as a watch but primarily a band I could wear on the other wrist. I used a FitBit flex before and until the Microsoft Band I was happy with the device to include the app and web service, and the social network to help me keep moving.
So I have been wearing a FitBit Charge 2 for a few days now. This version is a nice combination of convenient form factor and functionality. It has only been a few days but I have to say the device is a great value. It will take a few more weeks before I post anything of detail about this device but so far I am a happy customer.
NOTE: I mentioned the social factor component of the FitBit service. Peer pressure, contests, etc are a handy component, that extra push when feeling lazy. Issue is it only works with other FitBit users. Interested in competing with friends or just the general community you might want to check out Inkin.
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…
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
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.
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.
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.