Dizzy and I feel as though we have been on a little bit of a wibblerly wobberly journey the last few months. Our MS adventures have been rather up and down, and Dizzy wanted to do a little post on what has been going on – with the help of some photos mainly starring herself of course! 🙂
Firstly, we completed our final two rounds of Cladribine at the end of last year! We had a very sleepy few months as they munched through our immune system, but then it was all going great. 🙂 We had more energy than we could ever remember (still not anywhere near a normal person’s levels, but amazing for us!), and I even managed to do a play just after Easter! I hadn’t done one in 7 years due to MS grumpies, and I kind of never thought I would do one again, but I did! And I loved it!
I’ve sneaked in a little picture of just me. Dizzy wasn’t actually in the play…. She’s still miffed about it…
Now, these four mini rounds of chemo should be enough to stop any mischievous behaviour going on MS wise for at least a few years. Some people get to 10 years of good behaviour! But then a month after doing the play, when it was getting to busy exam time, we suddenly started getting really odd, deep pains in our arms and legs, and my head kept feeling like it was just going to fall off. I tried to ignore it for a week, but I knew the head falling off feeling wasn’t great. Within 48 hours of telling my MS nurse, we were in for an emergency MRI scan.
Dizzy had a lot of donkey thoughts going on during it. 🙂
After a little bit of waiting we got our results, and found out that our MS has progressed with inflammation at the top of our spine. 🙁 After a decision about us involving quite a few people, it has been decided to wait until the Autumn to have another little MRI (Dizzy can come again 🙂 ) and then a final decision will be made if new treatments are needed. It might be that the Cladribine isn’t working or it just needs more time.
So after the up and downs, we don’t quite know what’s going on, but we’re just happy that it shall be a needley/medicationy free summer. 🙂 And we are already starting to feel a little better after this recent splodgy patch. 🙂
Dizzy been out planting lots of sunflower seeds all over the place! 🙂 xxx
Hang in there. I know what you’re going thru. It totally sucks. I’ve had MS since 1996. All you can do is put one foot in front of the other. If you need to vent, I’m here. Stay strong! Love ya
Thank you so much Kirstin. That really means a lot. xx One foot in front of the other, is good advice, with a few naps in between. 🙂 xxx
I hope you will get some answers in the autumn that will help you to feel better 😊
Thank you, Anne. I hope you’re having a lovely Summer. 🙂 xxx
Our weather has been full of thunderstorms and rain but otherwise it has been nice. Thanks!
Hope you continue feeling better after the scary business you went through. Take care. <3
Thank you 🙂 xxx
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Big hugs! I’m sorry you and dizzy had a few wobbles! Fingers crossed the rest of the summer goes to plan!
Thank you 🙂 We are just going to have a restful/relaxing Summer. I hope you’re keeping well 🙂 xxx
Oh Heather … sigh. I give your newsy post a “like” for feeling better and a needle-free/test-free Summer and also for getting to be in a play again after seven years … that’s all good news. But I’m sorry to hear about the inflammation at the top of your spine. Perhaps the Cladribine’s side effects not only caused sleepiness but that pain … I am glad the doctor has suspended treatments for a while. Hugs to you and Dizzy all the way across the pond while you await a solution. You remain in my daily prayers. {{{ hugs }}}
Thank you Linda. Dizzy and I are just spending a lot of time resting and sleeping. 🙂 It’s giving us time to read lots of books though. 🙂 How are you doing? Have you seen Parker recently? 🙂 xxx
I have been trying to read more Heather. I was spending a lot of time online so trying to get away from the computer a bit. Though I discovered a TV show called “Everwood” that ran 2002 to 2006. I had basic cable but it was not on my basic channels. I have been watching it on Amazon – I don’t have a TV. It’s been hot in the UK hasn’t it? So at least you and Dizzy are laying low and staying cooler during the Summer weather. I hope you are feeling better these days. I just saw Parker this morning – he was dancing around my feet for peanuts. 🙂
Praying hard your treatment works
Thank you, We really appreciate it. xxx
I hope you and Dizzy have a wonderful summer. Many blessings and hugs from Dotty and me,
Thank you so much. xx Have you and Dotty got any plans for the summer? 🙂 xxx
That’s amazing about the play! I love watching plays, and I bet it’s even more fun to BE in one! I’m sorry to hear about the inflammation. I hope you get some answers.
I loved the graphic about the thoughts during the MRI! So relatable!!
Thank you Lindsay. I love watching plays too. Do you have a favourite one? 🙂 xxx
Hopefully, the summer won’t be so traumatic. What a harrowing experience! Have you tried the Cladribine as a stand alone treatment? MSAA “The Motivator” Research Update 2010 listed it in the beginning clinical trials as having a lot of promise. They were also combining Rebif. I had tried Rebif ,however, my white cell blood count was too depleted.
Which play were you in? At least you had the energy for it.
It is a quiet/sleepy summer. 🙂 I did the 4 rounds of cladribine over 14 months. One of the reasons I picked it was because it wasn’t ongoing. I like the freedom from meds idea. 🙂 x How have you been? Have you got any summer plans? 🙂 xxx
Since Dennis passed away, there haven’t been any riveting plans due to he was the navigator & I’m able to become lost in the Toyota parking lot. My niece from Dalles, Texas visited last week. Oregon was a relief although we’re headed for 100+ temperatures in a couple of days. I advised her to have her son put a heavy guard on his dinosaurs. You can’t be too careful!
After raving about the TN Oxcarbazepine, I’ve had to switch to Gabapentin. The sodium blood level was too low. It feels odd using drugs meant for seizures (ie: Epilepsy). So far so good. I don’t understand why they opt for normal levels anyway when the M.S. body isn’t working right . ?
Are the Gabapentin still working ok? With MS, you never know what’s going to happy next – drugs wise or anything else wise. I find it strange too. My last MS meds were originally, and still are, used for leukaemia, which seems so strange. x How is everything else going? 🙂 xxx
Yes, the 300mg gabapentin capsule taken in the evening is still working. It’s another strange truth being one of the 1st drugs tried for TN didn’t work and now it does.? I often think if I had gradually decreased the Rebif shots instead of quitting cold turkey, maybe the TN wouldn’t have occurred afterwards. And yes MS is unpredictable & diabolical the way the body attacks itself. Thank heaven they now have drugs to slow it down. Do you ever wonder where a cure may be found – the far depths of the ocean or on a Jupiter Moon? What if MS is just another virus that can’t be detected because present day microscopes don’t use the type of light required? Anyway, everything else is about the same. Hopefully, your MRI coming up will yield good results.
The MRI is booked in for the 21st… I’m going to a new place for it though, so that will be exciting! I thought I had visited all the MRIs in my area. 🙂 How are you doing with the gabapentin now? I agree with you, we are so lucky to have meds. I can’t believe only 30 years ago there wasn’t anything. xxx
How I feel you to the core