You think you’re out of the woods at least for a day, week, even an hour – and them WHAM the pain hits in your left leg down along the back of it making hard to walk and just plain uncomfortable to move.
I hate spasms! I especially despise the ones that hurt – a lot.
It sucks because I need to get things done but if I do too much, too fast without adequate rest as I go along, I reach my red line and something hits me – either loss of vision, weakness in my left leg and arm, dizziness, loss of balance or painful spasms. Ugh! It’s a guessing game to know how close I am to reaching my red line. It changes daily. Thankfully the issues resolve after a time of rest but that red line comes right back and becomes easier to hit after I’ve already reached it that day.
I need to sleep more. I need to go to bed at a decent hour and get more rest. But it’s hard because it takes so much to simply fall asleep. Insomnia and my mind running around makes me crazy! I need naps, but I don’t take them because I think I should be doing something productive. Plus it later ruins the plan to try to get to bed earlier. Arg! So frustrating!
Honestly, I have felt that my walking has slowly been getting a bit better since my stem cell infusion, but my spasms have been progressively getting worse. I wasn’t going to try to say whether the stem cells were helping yet or not because I know that it can take a while for things to start healing.
It has been a little over a month since I got my stem cell infusion and, like I said, I have been doing relatively well considering how bad things have been in the past. So, about two weeks ago I started having miserable spasms in both of my legs, especially my left one, and then I had some massive vertigo for about an hour, which stopped suddenly. I contacted my study nurse and let her know that I was having some problems but didn’t make a big deal out of them. I also had some issues with my right hand, trying to open my medicine bottles and dropping things – another thing which now in hindsight I see may have been an issue since I never had right sided problems before. Well, this was all about a week before my 1 month visit so we decided to wait until they saw and evaluated me on Oct, 31st.
My 1 month visit went well, I was walking better but it was obvious that my spasms were causing problems with my endurance walk. As I walked past 500 meters I started getting stiffness and some pain in my legs. But other than that stuff seemed ok. I had an MRi, VEP, Neuro exam, and loads of bloodwork. I got the results of the blood work a few days later and my T-cell and CD8 counts were all out of wack, which I was told was due to the stem cells working on my immune system. Yay, right?
Well…
A few days later on Monday, I got a phone call from my research team at Cleveland Clinic asking me how I was feeling and if anything was happening. I thought this was a bit odd, since they had just seen me 8 days earlier for an assessment. I did mentioned that my spasms were still pretty bad but that overall everything seemed status quo (I didn’t mention the funky eye issue, vertigo or the clumsy hand problem I had the day before, because to me those are very minor transient symptoms in my view). Anyway, they told me that my latest MRI showed new lesions and they needed to see me ASAP for a relapse assessment.
So, I went to the Mellen Center on Tuesday and my neuro let me know that I have several new active lesions, one of which is large and on the left side of my brain. After assessment it was obvious that I had some clumsiness of my right side (which is new for me) and a bit of visual field loss on the left side of my vision. The decision was made to put me on IV steroids starting yesterday to nip this in the bud. I have now had two days of the steroid IV and am still having these symptoms and the spasms are still pretty bad. After a phone call to my neuro today, he decided to extend my steroid infusion to 5 days from 3, so I will be on steroids throughout the weekend now. This must be a pretty bad lesion, because they usually don’t do this long of a treatment for something minor.
My neuro said that this is about the time that they see the stem cells start working with the other patients. So, it is quite possible that I would be a lot worse off symptomatically right now if it weren’t for the stem cells. Nobody really knows.
I am just bummed that I am having yet another relapse, albeit a mild one symptomatically, and am receiving my 13th steroid infusion since Jan 2010. It’s so disheartening because I have millions of stem cells circulating in my body but I am still not able to stop the MonSter from rearing it’s ugly head.
I truly am hopeful that the stem cells are working, and that the steroids will quell my inflammation in my brain and will help them continue to work on healing and repairing the damage, and possibly stopping any further activity.
So there you go my, finally my big update… I wish I had better news, but this is how life goes sometimes with this disease, unfortunately.
Not going tailgating today nor going to the Steelers/Browns game. My husband thinks I am still not well enough. He said it’s gonna be cold, windy, and raining, and he doesn’t want me to get worse.
So, now I get to watch it at home under my comfy down blanket, sipping hot apple cinnamon tea, eating Hawaiian pizza. Not a bad trade off.
I’m still getting over my yearly chest cold – I took my last dose of antibiotics this morning. Here’s to hoping this yuckiness clears up. I took a 4 day vacation from my Gilenya (MS pill) because I needed to fight off this infection, but now I have really blurry vision and a noticeable limp again on my left leg. Thus, back on the Gilenya I go.
And in true typical OCD “A”-personality fashion, I decided to overdo it today. I un-decorated – took the Christmas decorations down, broke down the tree, packed everything away under my crawlspace, and even vacuumed. Now I am paying for it which is probably the reason for the vision and walking issue now.
I don’t like being limited in what I can do, but I just have to learn to slow down or stop sometimes.
Thus, we begin a new year… 2012! Lets pray for good health!
