Update (Nothing Big)

I feel like I hit a nice personal milestone today. I injured my ankle last summer and as a result have been in physical therapy for six months, off and on. It started out being about my ankle and then later my PT wanted to address the fact that my body overall was very very weak, from all the years of MS suffering. Today I was finally discharged from PT and have gotten SO much stronger. I also have a wonderful workout routine that I can do for the next several years, when I get home from work each day. Going forward, I’m keeping up what I’m already doing, and swapping out PT for taking family (husband, me and two dogs) walks on Saturday mornings and also getting back in the pool on Sundays.

My physical therapist was right- I really was very very weak. I still am, but less so. I went from not being able to hold my one 13lb. dog for more than a couple minutes (and having to use two hands), to being able to carry both dogs at once, one in each hand, while moving around throughout the house on flooring that may potentially have dog toys laying around! I can also dance now, for a good 3-4 songs before it gets to be too much.

I’ve also been out of work for several months (for all the people who didn’t know this- please don’t feel bad- I just wanted to stay low-key about it) and that was a blessing in disguise to have a job that was bad enough to quit! I changed to the Paleo diet right away, started going on the treadmill daily (worked up to 30 minutes a day), and also have done strength training 2-5 times a week. I have so much more energy with all these things, and with drinking 16 oz. of kombucha daily. The whole thing has been really really healthy for me, even if hard financially! I start a new job on Monday.

My physical therapist even said from her perspective, I could probably do a “Couch-to-5k” training program. I am not sure that’s the best thing, from the perspective of MS, but I am hoping maybe I can finally walk 5K in the Vision Builders 5K this Fall. I might need my awesome hiking poles for support, and a camelbak pack to stay hydrated, but that’s fine with me! I know I can walk 2K comfortably right now- and maybe 3K if I use the hiking poles…

Anyway, just wanted to post an update since it’s been five months. I’m about to go into busy mode soon. Hope you are all doing well!

Hi!So, I checke…

Hi!

So, I checked in with my IR and everything was just fine- same as last year at this time, according to the nurse’s observations (my IR himself had to leave to go save someone’s life… ha, a likely story :)). She said though that Dr. Williams is no longer pursuing a study. It sounds like a combination of having too much on his plate, and more importantly, not having support from his hospital to pursue a study- I think he got a lot of flack for treating me and a couple other people. The FDA also says now that no MS patient should get this treatment because it’s not clear that it helps MS, and because there have been a few cases of complications from the procedure. One CCSVI supporter (a doc) pointed out though, that ALL procedures involve some level of risk. I don’t know if the risk is any higher with this procedure than any other IR procedure that is like it. And, the FDA is still perfectly fine with patients who do not have MS, getting the exact same procedure for the exact same condition (blocked jugular veins)- it’s safe and has been done in this country for over 40 years now. But with MS patients they have now issued a recommendation that no MS patient get this unless it’s as part of a study.

On a personal note- I got my MRI back and though the results were really uninformative, I did get the sense overall that I have no active lesions or new lesions- yay! 

Annette Funicello was found to have one completed blocked and one 70% blocked jugular vein. I believe she recently got the procedure but that they feel it’s hard to know the benefits in her case because she’s so advanced in her disease progression.

Anyway, this might be my last post for a bit unless anyone writes me with questions! I hope this blog is useful ongoingly to people who are considering the procedure. Best wishes to all and thanks for being with me through this journey of healing! I’ve learned so much from this whole thing, but one of the things I’ve realized lately is that you know what your body needs, in some way. I learned to listen to my instinct a lot more and it is serving me well. I don’t mean I know what prescription drug I need and that sort of thing, but I just knew I had to get this procedure and I did and it helped. Anyway, I am yawning and probably not making sense anymore so I am off to bed. Thanks again!

Hi,It’s been f…

Hi,

It’s been forever since I’ve posted- I’m now at one year and nine months and still feeling great. I think the positive thinking helps- I had to work on that so I wouldn’t constantly fear that the MS would come back. In the last several months, I have had two new symptoms (also was under a TON of stress):

– Legs buckle after too much work on feet

– Sometimes whole right side of my body feels extremely “weird” and uncomfy. This comes and goes. 

Other than that- I now take 1/3 of the muscle relaxant I used to take. That is awesome. 

Just got my first mri since the procedure and am curious to know the results. I’ll keep ya posted.

That Divinyls Video and Update

Hi All,

Sorry about that video not coming up. I will try yet again here:

So lately I’ve been going through a bunch of different possible drugs and herbal things for overactive bladder, and none of them are the right thing. Some make me cough all night, others make my body very very weak, etc. It’s been hard to feel “stable” while going through all the weirdness of these meds. I can’t bring myself to try a new drug for a couple weeks at least, so I am going to try pumpkin seed oil and maybe also saw palmetto next. I’m also restarting a homeopathic med., just because I already have it so why not?

I’ve been feeling pretty frenzied and anxious about finding a new job lately, and I’ve seen a definite uptick in MS symptoms b/c of this. But relative to my days of being very sick, it’s nothing.

To drain some energy each day (so I have less to get anxious with!), I decided to try to go on the treadmill most days. My husband has been running every day for a half hour on the treadmill and it’s inspired me. I need to go EXTREMELY slowly to sustain 35 minutes, but it’s fun because I can watch tv at the same time. But this is probably good b/c I never had time to take exercise seriously after my procedure and my walking is still pretty wobbly due to poor strength. So I do stretches every morning, handweights 3x a week, and now treadmill. Hopefully I’ll be in good shape to do some gardening this summer!

Divinyls singer gets CCSVI treated successfully

Here’s an Australian news story I found on a singer who got CCSVI treated and now can walk much more than she could (8 blocks instead of 1 block). Yay!
Weird- the whole post didn’t get posted the first time. I’ll see if adding text helps at al.

April Update

Hi All,

It’s been a long time since I’ve written. I’ve had a lot going on though. Been looking like crazy for a new job, while temp’ing 20 hours a week. Of the types of things I’m considering, the only type of job I feel physically unsure about is being a trainer. I think I could do it, but I’d have to build up some physical strength- this is something I did not have time to take on post-procedure- such a rocky recovery, then started the busiest job I have ever had. I’m working on the physical strength now that I have more time on my hands. I’m trying to lift weights 3x a week and I do some strengthening exercises in the morning as well. But, to do a training job, I’d probably need to work up to going on the treadmill for 30 minutes a day, in order to have the level of strength I’d need. And, I’d have to successfully treat my constant bathroom-going. 

I tried the Gelnique and then stopped it twice- it definitely worked but I had so many little side problems that I didn’t know if they were caused by the med. or not, and if I was just trading in one set of problems for another. The jury is still out on this one. 

I had a very bad upper respiratory infection for about 10 days. One night I forgot my muscle spasm medicine and combining that with extreme fatigue from being sick, I literally couldn’t walk and/or had to walk with a cane. Thankfully Aaron picked me up every time I fell- what a supportive guy (literally!). 

Anyway, I’m all better now!

Oh, and one AMAZING change I’ve noticed in the last month (it might’ve happened several months ago, but it was cold out so I didn’t test it). So one night the comforter was too hot and I must’ve kicked it off in the night. Usually this would be HORRIBLE because not having a thick blanket on me, even in hot weather, would mean that I would wake up with excruciating sciatic pain. I’m not kidding when I say excruciating. This is somehow now miraculously gone- I slept through that night with no problems. So I tried again for the next two nights, and again, no problems! This is such a blessing.

Lately I’ve been really stressed out about not having a permanent job, and as usual, I’ve been taking the stress into my physical body, and not sleeping well. I’ve got to manage that stress better- I’m thinking maybe going on the treadmill every day would be good- it’s just hard to find a consistent time every single day (I only seem to be able to do something long term if I do it every single day). 

Anyway, that’s an update on my health! Hope you all are doing well and that those of you who have been treated for CCSVI are still improving!

I have been procrastinating in getting my one-year follow-up MRI. Need to do that…

Update

Hey All, Sorry I’ve been a bit awol. I was very very busy with job-related drama. The upshot is that I’m no longer working in the Fundraising job I talked about. I’m not at liberty to share any details about how and why though- sorry! I’m about to start a new job that seems really great, working for someone who seems really down to earth, friendly, and good at what she does.

I’ve had a bunch of minor issues with the med. I started taking for urinary issues- you stop sweating so I keep overheating and that causes muscle weakness, your eyes get drier and so they itch, I’m having major dry mouth issues, felt like I had a cold every day, etc. But, I also had an actual cold for a while, and I’m not clear how much is related to what. So I’m going off the meds. for a week to see if I can sort this out.

I had my one-year checkup with my neurologist and as usual, spent less than five minutes in his office to do the “thorough neurological exam”. He is just not one to spend time with people… Oh well, at least I got a requisition for the one-year MRI follow up and I’ll hopefully have that soon. Those results should be interesting, so I can see if I have active lesions on my brain or spinal cord. It seems that most people who’ve had the CCSVI procedure don’t have active lesions. I’ll keep you posted!

After the period of job stress died down, that flare-up in my symptoms died down and I’m back to feeling great overall! No dizziness, fatigue, vision issues, numbness or anything that went away with the procedure. Yay!

Update

Just wanted to mention that I’ve been having problems with dizziness in the morning, for about the first half hour after I wake up. Also, just today, I’m having that headache that used to happen when I would touch my chin to my chest, pre-surgery. The headache goes away a few minutes after raising my head back up. It’s slightly annoying, but no big deal. I’d like to remind everyone that the nature of MS for most people is to have ups and downs, so please don’t get worried if I’m having temporary symptoms (Mom and Dad!) Personally, I’m not obsessing over it.

Update

Hi All. Happy New Year!
Please excuse me as I use this post to vent a bit. My two remaining MS symptoms are driving me CRAZY!!
1. Muscle spasms/nerve pain have been worse in the last few days, but increasing the medicine for them hasn’t helped. I don’t know if I’m fighting a cold again and if that’s why things are flaring up. But it sure doesn’t help my sleep anyway, and it still takes about three to four hours before my body stops feeling stiff in the morning, and feels awake. This is even with stretching, joint supplements, coffee, etc.
2. My archnemesis- having to run to the bathroom all the time!! I’m still getting up three to five times a night. And, having to go several times during the day, often several times in a row because I just can’t empty all at once. And when I have to go, it’s really urgent. Sometimes just standing up makes me have to run to the bathroom. Changes in temperature definitely make me have to run to the bathroom. I think I must go 20-25 times daily, which I assume is way above average, right? I still have to get the three tests at the Urologist’s office. I am so impatient to be on treatment. I never realized how much the bathroom issues affect me, because I used to be consumed by much bigger things to deal with, and I also wasn’t putting out nearly as much energy as I do on a daily basis now (I think I must literally put out 5-8 times more energy a day). So the same issues are becoming more of an obstacle. Having to run from the couch to the bathroom is one thing, but having to find a bathroom while running errands, which I have energy for now, is much more frustrating. Sometimes I have to go to a bathroom in every store I’m in.

Well, I realize I’m one of the luckiest people on this whole earth, with all I have in my life, so if I have to be stuck with symptoms, I certainly think these are some of the most benign ones. But, it’s just my nature to constantly want to make things work better, especially when they’re things that cause upset or discomfort or embarrassment. So I’ll keep looking for answers…

On another topic, I decided I really cannot afford personal training. I took a pay cut with my new job- which is great because I’m so much happier, but it does mean I really cannot be thinking about PT! I’ll have to try and carve out a Saturday morning workout involving weights. If anyone local wants a Saturday morning workout buddy, just let me know. We could try it for a couple weeks and see how it goes.

My body still isn’t very strong- I haven’t exercised a lot this year- just stepping up my life functions has been enough exercise. All I do is stretch daily, and then walk my dog for 10 minutes a night.

Lost weight and dieting

I lost 10 pounds, and I have to say that my special diet has made me have to use the bathroom even more than before, if that was possible :). My pain, stiffness, and muscle spasms also have not decreased. But, the diet has had two great benefits- I’ve had no fatigue or day time tiredness, except what comes from having pain and poor sleep at night. I have several sources of tiredness so I’m glad that I cut out the source which is certain types of food.

I’m guessing I have to lose another 10 pounds before I notice a different in the quality of sleep, and the energy that comes from just weighing less.

I also visited the Urologist the other day, and he’s going to run three uncomfortable tests over the next few weeks so he can determine the appropriate medicine for bladder retention and inability to empty.

My next step of lifestyle changes is to start exercising again (I needed more energy first before I could take this on). Maybe I’d start in on personal training again in the new year– but I would need to save up for that a bit first. If anyone local would want to share personal training at Coach Me Fit with me, please holler!