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.
Wow like day one my TM is back. After a short stint in the hospital for a facial staff infection things have gone awry.
It started slow as usual but right now the paralysis from mid abdomen down is wreaking havoc. I even borrowed a walker from my neighbor, something I resisted the first time around.
The timing is horrible. Uggggh.
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.
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.
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.
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.
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…
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.