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
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, I did what I could to forget all about the information I received on Friday… I didn’t say I was successful. I just have to post this page that the medical system that has been attending to me over the course of a few years and two bouts of Transverse Myelitis. http://my.clevelandclinic.org/disorders/Sarcoidosis/hic_Sarcoidosis_Treatment_Options.aspx
I can’t help focus on the specific of the treatment that I am set to undergo…
- Infliximab or adalimumab: These medications, which are given as an intravenous injection once per month or under the skin (subcutaneous injection), have been used recently for patients with severe sarcoidosis. They are usually used after other options are not successful or not tolerated.
I have to say that I grow more skeptical as time passes. Again this has gone for several years. Originally after TM and soon to follow and almost fatal DIC episode, the allergy/immunology experts said I probably had CVIDS (Common Variable Immune Deficiency Syndrome), but most patients who had it required constant infusions and suffered severe symptoms frequently. The diagnosis was basically shelved. Of course lymphoma and Hodgkins have come up over and over as well. Never was a long term treatment plan suggested, heck all of the physical rehab they said I needed never came either until I took matters into my own hands. Another curious part of their description is “They are usually used after other options are not successful or not tolerated. ” Two occurrences of TM, the first time I was prescribed IV Prednisolone so that they could reduce the swelling and do a lumbar puncture, they never determined I had Transverse Myelitis, it wasn’t until I went to the Cleveland Clinic and saw several doctors and underwent major imaging tests before it was determined I even had TM. Recently my Neurology doctor said, yep that is a TM reoccurrence and we will get you set up for some IV steroids. I don’t like them and they are certainly no cure but I never said I couldn’t tolerate them.
Yeah I guess I am just thinking about it too much but it just isn’t adding up at this point. I would think about a second opinion but I don’t have the time I can take from work at this point to pursue other opinions.
So now I have a “likely” diagnosis, one which has never been mentioned before and lets get treated? Huh? The treatment cites “severe” sarcoidosis… Where did severe come from considering there is no definitive diagnosis. I did read how Sarcoidosis can be difficult to diagnose and my initial biopsy didn’t show the granuloma they expected but additional tests done days later had markers. Again how has “severe” been warranted? There seem to be several treatments before we reach the severe level. Yes all the questions I should have asked my doctor at the time but panic set it and I didn’t really have the composure to form such questions. I will have to take this text and form it in a question and send to the doctors but it was nice to think out loud and record it here 😉
So, I am still trying to digest the “likely” diagnosis but wanted to record something before it got lost in the churning of my mind.
Arrived back at work today to find a voicemail from the Pulmonary doctor waiting. Why I wasn’t called on my personal number is just a small annoyance but would have been nice to use my time off to get the necessary blood test done without impacting my already dwindling allowable time off from work… oh well.
So I return the doctor’s call, sort of hopeful. About 5 hours later I get a call back. To the doctor’s credit, she already had a treatment plan in mind. However it was prefaced with “based on some additional testing, it is likely you have Sarcoidosis.” Yep, you have to love the “likely” pre-cursor. Considering all of the potential diagnosis (from cat scratch fever, Hodgkins, MS, etc…) this isn’t really out of the norm in my history but still does not instill a great deal of confidence.
So now I have some research to do and find a way to get all of this done without jeopardizing my employment.. yeeeha
On the bright side, if it is neurosarcoidosis this article seems promising. The downside is the effects on the immune system.
Yeah this is frustration speaking but c’mon. Day 2 of the 3 day IV steroid treatment and its no different than when I was prescribed this 6 years ago. Granted back then it was admittedly just to reduce the swelling so a lumbar puncture procedure could be done, this time the Neurologist looked at me with the most confident face and said it was the treatment I needed. That inflated arrogance just bothers me.
Yes, much of the pain has dissipated, but the real issues are things like being able to walk and other typical functions. Just venting here but at this point I am starting all over after 6 years. Now that pain has subsided and there will be no real diagnosis provided I will have to get back on the bike and bowflex and work past it.
So as my last post preluded, the information I received yesterday was sort of expected. The doctor called to talk to me about the final findings of the last test. As has been my history (diagnosis of CVIDS, lymphoma, Hodgkins, etc…) the doctor’s findings fall right into line. The lymphnode biopsy was negative for Sarcoidosis, but the lung washings (huh?) showed potential evidence of Sarcoidosis. In short, we think you have it but there is not enough information to actually provide a diagnosis. The doctor will confer and determine what long term treatment can be crafted, my translation … not a damn thing will happen.
In the meantime I have been basically hobbling to work and trying to survive as I wait for treatment for the original symptoms (TM). I am out of time to take at work to address issues or be off sick/hurt. I am scheduled for three days of massive steroids starting tomorrow (7.29.2011), which as I recall provided some relief but it was certainly no fix. The carousel just spins round and round.
Okay, all results are not in but I just had to post a frustration. So, while this has been going on for over a month (part of it was while my health insurance hadn’t become effective yet so it was a patient waiting time) and then seeing a doctor and being rushed from one specialist to another. More and more tests (bruised arms to prove all of the attempts to draw blood). So, a little over a year ago after a CAT scan my hematologist mentioned some nodules in the chest/lung area. Knowing they would be going down the lymphoma trail again (yes this would be the 4th time in 16 years), I didn’t pay much attention and it was just something the doctor used to refuse removing my spleen. In the meantime my health was great and job changes made seeing a doctor a very costly thought so it was never explored. Of course the doctor is now saying it was my lack of cooperation… So after seeing the neurologist I was sent to the pulmonary specialist. Keep in mind the Neurologist pointed out the treatment I needed and every concurred, but to date I have not received that treatment. Because of my healthcare providers rules all tests have to be schedule a week in advance…. no treatment in the interim because it could skew results. No that is not the frustration that generated this post surprisingly.
So I sit through a 2 hour MRI, and still weary from that I check my voicemail, my next test, a bronchoscope, is scheduled for the 29th. Livid is not the word for my reaction. I had been calling the Pulmonary doctor, trying to plead my case because treatment for my symptoms is pending, so when I heard this it was followed up with a tirade to the doctor. A few hours later, apparently there was a cancellation the next day and they could get me in… Small victory.
So, navigating the Cleveland Clinc not withstanding I get the EKG and blood work and then went for admitting. All in all a smooth process. So I get in the prep area and the surgeon comes to speak with me. We chat, he explains the procedure, yada yada. Then he says “I don’t expect to find any granular deposits which would indicate Sarcoidosis”, all I can say is the anger rose but all I could do was laugh. If we go back 16 years a biopsy was read as “cat scratch fever”. Every MRI is translated with a preface of “the radiologist report reads” and then the doctor completely contradicts it.
My neurologist, the one holding the key to my treatment is gone this week, so hopefully Monday (7.25.2011) I will hear more. Of course now I am running into how do I continue pursuing this, to include a week of in-home IV steroid treatment, and keep my job.
While it is premature to write this, the fact that it even came up seems notable. With this recent flare up the same battery of tests have been enacted. As I mentioned before, with a new Neurologist, the simple diagnosis of Transverse Myelitis became less simple.
So after the CAT scan, I was sent to see a Pulmonary specialist. This doctor had a barrage of questions. When it was all said and done I was introduced to a new term. Granted additional blood tests as well as a to be scheduled bronchoscopy with biopsy are still needed but the new thought is I have Sarcoidosis.
According to the doctors this could be good. After doing some reading maybe they are right, but after all of these years and so many experts it is frustrating. More frustrating is all the doctors agree I have to undergo some intense steroid treatment to alleviate the debilitating symptoms I have been experiencing for over a month but they won’t start treatments until all of the tests are done. Yes if I wasn’t the patient I might understand that but as the patient it is infuriating.