Multiple Sclerosis Delusions: Update
I haven't written much about my MS over the last couple months (save for a bit of whining about the Copaxone) because things have generally been ok for me on that front.
A few of the symptoms I had left over from my relapse in June 2006 have persisted, and include numbness and tingling in my left foot, leg and the left side of my lower back, in addition to that weird MS "itchiness" that shows up at random intervals and in various places. For a while I held out hope that they would fade away over time and occasionally I've woken up in the morning and thought, "wow, that left foot feels almost normal!," only to have the numbness come back with a vengeance a day or two later. I've slowly begun to accept that these symptoms are probably going to be around for good.
What I'm struggling with now, however, is whether or not I'm headed back into relapse mode. Ever since my last appointment with my neuro and the run-in with the scheduling secretary, I've been loathe to jump to any conclusions about what my body is doing and whether things have changed.
Things sort of feel worse to me, but until I start having trouble walking, staying awake or holding a pencil I just can't seem to make myself pick up the phone to do battle with trying to see the doctor, for fear of being told again that "things look the same as before." So I'm holding off making any decisions on this front because I have an appointment with my neuro at the end of the month.
At that point, I'm not sure how I'll feel so I guess I just want to see what he has to say. I am also, I'm happy to report, going to take the print-outs the scheduling secretary sent to me - complete with her letter asking for $25 - and discuss the "procedures" in place at their office. I have not received another "bill" from their office for $25 so my guess is these "fees" would be going directly into her pocket. I have no proof of that, of course, but I plan to let my doctor know how I've been treated and ask whether this is standard procedure. I am also bringing my mommy with me to the appointment, as she's very good with these medical and insurance people, whereas I tend to back down regardless of how ludicrous their explanation. (Why? I don't know. I think I just want everyone to like me. :)
From a medication standpoint: things are ok. I've given up heating OR icing the area where I'm injecting myself because neither seems to do much good for the injection-site reaction. The good news is, I've gotten used to the immediate "bee sting" reaction that happens directly after the injection. Does it feel good? No. But it only lasts for 5 minutes and has become mostly tolerable. What bothers me more is the itchy welt that shows up about 12 hours post-injection and sticks around for 2 to 3 days. Still, none of these side effects is bad enough to stop me from taking the meds (at least at this point) and my mood is much improved, for the most part.
It's interesting: in writing this post, I went back and re-read some of my posts from early in the summer and it's crystal clear how depressed I was. Odd that I couldn't recognize it at the time, even after having struggled with it for the last 15 years.
So that's the MS update for the moment: bottom line is, I'm no longer depressed, I feel pretty good most of the time and the meds seem to be ok. I suppose I couldn't ask for much more than that, right?
Comments
So sorry to hear things are feeling a bit "worse" on the MS scale...it's always such an unknown and never clear what to believe in our bodies. My sense is, however, you DO know on some level what is right for you and you'll figure it out. I am really hoping the Copaxone slows down your process!
Someday, I have wishful thinking that we might meet and swap bread recipes (like I HAVE any of those?!?) and/or just speak in person...I admire your tenacity and wit and hope you continue to blog about your experiences as they ring so true.
Linda D. in Seattle
Posted by: Linda D. | October 7, 2007 03:54 PM
I was having a REALLY BAD TIME with the bee sting feeling, too. I actually ended up setting my injection to go in deeper (hard to believe). It really helped. Now, like you said, it doesn't feel good, but I only barely feel it, as opposed to the searing bee sting burn. Now if I only could beat the itchy red welt. Maybe some hydrocortisone............
Posted by: christyn | October 9, 2007 07:36 AM
sorry to hear the ms is acting up again, but glad the depression has lessened - I reckon it's like a see-saw where the balance between it all is never quite right & you just have to sorta figure out how to keep it somewhere off the ground but not stuck up in the air - if that makes any sense at all. how's the wee princess doing? xx
Posted by: Sara | October 10, 2007 01:50 AM