Had a bit of a set back with starting the Lemtrada. My shingles titer came back to low. So, I had to have a Shingles vaccine. Because it's a live vaccine we have to wait 6 weeks now to start. Looks like the new date will the the week of June 20th. I was very disappointed. After psyching myself up to actually take the drug it was very disappointing. Now I'll have to go through the process all over again. I found a great support group online. Most of the folks there have had a really positive experience with the drug. It's NOT a cure, but it's supposed to stop the progression of MS. Some folks actually get function back. It would be great to walk like a sober person instead of having a gait that makes me look drunk! Would also be nice to lose the motorized wheelchair and cane.

Time goes on......

Wow. I can't believe so much time has passed since my last blog. Still fighting MS, still walking, albeit with a cane. Sometimes I'm in the chair depending on the day.

Since my last entry I've moved across the country. We now live in TN. The weather is better here for me. Yes, it can be humid in the summer, but the temperature is rarely above 90 in the summer. Unlike CA.

I've also been on Copaxone, Tecfidera and Tysabri for my MS. I've become steroid resistant so steroids no long are effective during exacerbations. The most recent drug I was on, Tysabri, was actually one that I did the best on. In the 9 months I was on it I only had one relapse (a nasty bout with optic neuritis). Unfortunately, I've had to discontinue it because I am no JCV positive. So, no were considering Lemtrada. A drug that on the surface sounds wonderful. A five day run of IV medication followed by a YEAR with nothing, then at one year a three day run of the IV medication. Then your done. Finished. No more medication. Sounds like a miracle drug for MS doesn't it?!?! Pffft, until you read the side effects. Unfortunately, it seems that this particular drug is all that's left for me to try. SO, we're researching and waiting to hear from the nurse that will be assigned to me. We haven't made a decision. (I say WE because my husband's input and thoughts are just as important as mine are during this process). I'll keep you posted. Promise. If any of you have tried Lemtrada I'd love to hear from you.

Busy Day

Just wrapped up a busy day. Shopping for an anniversary gift for hubby, then the last night of Lent bible study. Rushed home to run protocols. Still learning to balance running programs with life. Missed my 1p.m.  time as I wasn't home. So I got home at 4:30, ran a program, went to church...got home and just finished running more programs. Payng for not keeping to the schedule. My back pain is worse than it has been for the past week :(  My own fault though.

Thanks to Muff for the author suggestions! Wish you could make it to Texas. Hopefully someday this treatment will be widely available to everyone AND covered by insurance! I know it's turned out to be an absolute blessing for me in regrds to my pain, sleep and MS symptoms. TIme will tell if it helps prevent exacerbations....but you can bet I'll keep you posted!

Another Day is Done

Another day is drawing to  close. I just finished running my last protocol of the day. The new machine is working wonders for me. I wish you each could come over and try it! I have found it takes care of my left leg neuropathy better than any dose of Neurontin. My right knee pain is almost non-existent. I'm sleeping MUCH better and even my back pain is more manageable. 

It's doing a great job of managing the SYMPTOMS of my MS. Of course the real test will be determining if I have fewer exacerbations while using the machine. I've been experiencing exacerbations about every 4-5 months. I just had one right before I went to Texas to get the machine.  Wouldn't it be wonderful if the machine is actually able to help control the actualy disease process of MS. Time will tell.

I'm still learning how to juggle my everyday activities and running the machine every 4 hours. Seems there just aren't enough hours in the day to get everything done.  It can be a bit frustrating to have to plan everything around running my protocols, but the benefit far outweighs the frustration. 

Another thing the machine forces me to do is RELAX. It means that at least three ties a day I am forced to be still for 1.5 hours. I Read, doze or watch TV while I'm running the protocols. So, if anyone has read any good books lately let me know!

Home Swwet Home

Yeah to being home! Although yesterday wasn't much of a day of rest. We had too many errands to run after me being gone for a week. Today is Church and more errands. At least I was in bed early last night and got to catch up on some sleep.

Learning how to manage my time with running programs three times a day. Set the alarm for 6 this morning so I could get one program in before 8 am mass. Will run another when I get home and before I go to Vestry. Then we have errands to run. So it will be evening before I can catch up.

My knee feels great. Minimal if any pain there at all. My back pain is there, but much more tolerable than without the machine. My balance is better as well. I'm seeing huge strides as week one comes to a close. Can't wait to see how I'll feel at the end of next week!

Travel Day

Yesterday was my travel day home. So, no time to blog. Left the hotel at 7 am Texas time and didn't get home till 3 am Texas time. LONG flippin day. Only programs I ran all day we're the ones at the clinic in the morning. Needless to say by the time I got home not only was I totally exhausted, but hurting as well.

Ran programs as soon as I woke up this morning which helped take the edge off the knee. Going to work on the back this afternoon. I''m so glad to be home! I'm very tired today so I don't have any plans to do anything but rest.

Will keep everyone posted on how the tretments go now that I'm home!

Treatment explanation

OK...I'm going try to  explain what the treatment is I'm getting in short, sweet terms.
The VT-200, or Vecttor system, delivers electrical stimulation, through electrodes, on accupressure points on my hands, feet, arms and legs to provide symptomatic relief of chronic pain.The machine determines the right stimulation intensity by automatically measuring my body temp through two specially designed Thermistors that are on my fingers during testing. The Thermistor monitor my skin temp. The VT-200 delivers four channels of current through the two treatment leads and 8 electrodes that are on my hands/feet, arms/legs according to whatever treatment protocol I'm running. They do not stimulate muscles. They stimulate nerves. It is completely painless. In fact I don't feel ANYTHING during my treatments. I doze, read or chat.

Day 4 of Treatment

Day four over and done. I feel pretty darn good. Doc added two more protocols to my treatments. Means I'll be running the machine three times a day instead of just two. Fine with me. It's working and I feel SO much better. He evan gave me a protocol to run next week after I see the dentist! WOW!

I've asked Doc to give me a written explanation of exactly how the machine works so I can post it on here. All I know is it's working and I feel like a different person.

Tomorrow we'll be re-doing some of the testing we did Monday so we have actual numbers to measure my improvement. I'm especially interested in the Vibration Perception Threshold (VPT). (This test indicates whether or not the large sensory nerve endings in the feet are functioning within normal limits. Elevated VPT numbers indicate dysfunction of these nerve endings which will cause problems with balance, coordination, and walking. The VPT numbers are always out of whack with MS patients). My number we're seriously messed up. Will be interesting to see if the VPT test shows what I think it will. My balance is starting to improve!

I'll keep you all posted!

Treatment day 3

I feel better today. Everyday I see an improvement. The neuropathy pain in my leg is now down to a level 3/10 pain. That's INCREDIBLE. It's there but now it's more of an annoyance than something that affects the way I walk. I actually woke up this morning LAYING on that leg. Usually when I roll over on it in my sleep the pain wakes me up and I have to get off it. My back is better as well. Still have pain there, but it's better.

The sleep program I ran last night before turning in was pretty effective as well. I was out by 9 and didn't wake up until 4. For me that's amazing.  got 7 hours of solid sleep! That NEVER happens.

Today we concentrated on my Right knee and my MS. I still find my body forgetting where my feet are but I don't think it's as bad as it was on Sunday.
All in all a big improvement in several areas after three treatments. The best part is I get to take the new machine home with me so the treatments will continue.

Treatments going well

I didn't blog yesterday because I just wasn't feeling up to it. The treatments kinda took the wind out of my sails and my blood sugar got to be a bit on the low side. I'm feeling better today and after talking a length with the Doc I added more protein into my diet in order to help keep my blood sugar up. He also wants me to add a little Rocky Road Ice Cream to my diet EVERY evening. My kinda Doc!

I wish you all could come to Texas with me for this treatment. It's non-invasive...absolutely painless and it works!  In very basic laymen terms you simply hook yourself up to a machine with electrodes and temp. monitoring gadgets and read or watch TV for 80 minutes. Piece of cake. Of course due to the changes it makes in your body it tends to make me feel "off" for a few days, then I feel absolutely wonderful. Already I'm sleeping better and I didn't have any leg cramps last night! My back pain is down from a level 7/10 to a 5 today as well! For me that's simply awesome!

So, day two down.....several more to go before I return to home sweet home and hubby.

Travel Day...and leg cramps.

I made the right decision by coming down to Bakersfield last night. Hubby say we got lots of snow and as it rained first....ice. Not good for driving.

My evening was uneventful and the night quiet. Until 4 am when I was awakened by the worst leg cramps. PERFECT. I hadn't had leg cramps in months and as I'm on Neuontin I was hoping I wouldn't have them anymore. WRONG. Damn, they hurt, and on a travel day no less. Walking can be awkward at the best of times let alone when your legs hurt and the muscles are fatigued from cramping.

Gonna be a long day today. Other than the muscles aching in my legs I actually feel pretty good today. My energy level is good and my mental attitude is positive. I'm really looking forward to my treatments in Texas, although I will miss my hubby!

MS is "Lucky"??

I'm sitting alone in a hotel room. Big snow predicted for home and I couldn't risk being snowed in and missing my flight tomorrow morning. One thing that I absolutely refuse to lose to MS is my independence. I may walk like I'm drunk at times....my speech can often be confused and I may have to use braces and a cane to get around, but I do everything that I can independently. I have a great husband. He knows when to help and when to step back and let me try.

I know he wasn't exactly thrilled to let me go to Texas to see Doc by myself. Especially since I am recovering from an exacerbation and he knows any stress can throw me back into another one. (Everyone knows how stressful just getting through airport security is). However, he also knows how important it is to me that I am as independent as I can possibly be.

I'm very lucky so far with my MS. I'm still mobile, and if one overlooks the leg brace and cane no one would think I have MS. Those of you who know me and my MS history might think I'm out of my mind to say I've been "Lucky". "They" think it was the MS that took my hearing leaving me 100% deaf. Who can call that lucky? I spent time in the hospital, rehab and in a chair three years ago due to the worst exacerbation I've ever had.  I typically go through and exacerbation ever 4-6 months requiring IV steroids. That's "Lucky"?? Who would call that 'Lucky".

I would. You see I have a powerful force on my side. God. Without my faith and the strength God gives me there is no way I would have been able to overcome the obstacles MS has thrown in my path. Through the struggles I've had with MS there have been lessons learned and blessings received. I've met wonderful people BECAUSE of my MS. I've had opportunities and doors opened BECAUSE of my MS. So, while yes, it's true, having MS sucks, I choose to focus on the blessings I've received as a direct result of having MS. Don't get me wrong. There are days when I get frustrated because I can't grasp things, or talk right...or hear or walk without stumbling.  However, I believe it's how you handle those challenges that tells the world who you really are, what your really made of. For me, those challenges also bring me closer to God. Those challenges are a reminder of how much I need Him in my life for strength. I can't "do" MS alone. Even with a husband who is behind me 200% and family and friends with unwavering love and support it's the strength God gives me that keeps me going. So yes, I would say I've been "Lucky" with my MS.

Neurontin

Finally...a decent night sleep. Not a perfect one, but at least I was able to sleep for a few hours at a time. My Doc increased my Neurontin dose yesterday to 600mg TID. We had to do something for the neuropathy I was having in my left leg. It was so bad I couldn't stand anything to touch it, let alone roll over on it at night. As much as the Neurontin helps I don't like the fog" I find myself in until my body adjusts to the increased dose.

Ahh the joys of MS. Just coming off an exacerbation I'm hyper-aware of everything. Working to keep my stress level under control and doing everything I can so my body heals. I still have some additional weakness on the left that wasn't there prior to this last exacerbation, but I also know it will be weeks before things have the chance to heal and come back. One step at a time!

Another Leg of the Journey

Ahhhh...the wonderful world of MS. Just experienced another exacerbation and went through a round of 5 doses of IV steroids. Not fun to say the least. I've come out the other side...a bit weaker but without any serious residual neuro effects. It's a no brainer as to what caused this exacerbation. Stress...pure and simple. In the midst of a bathroom renovation that had more problems than not.

I head to Texas on SUnday for medical treatment for my MS and my back. Getting a new machine (New generation) and am looking forward to seeing what kind of difference these treatments make this time around.

Been awhile

Wow. Can't believe how long it's been since my last post. Life has a way of speeding up and moving at warp speed. Things have been going pretty well. My MS has been under control. With the exception of a few bumps in the road (usually during times of stress) things have been pretty steady. Yes, I have to watch how I walk and I certainly have to watch my stress level, but things are GOOD! It's been a few months since my last round of IV steroids and I've lost 26 pounds. WOOT!

Infusion Day One

Infusion's started. This time I'm only doing 3 days of infusions instead of 5. Thank goodness. I thought it had been longer since my last round of infusions, but found out today the last go around was in April Only 4 months ago :(

Thankfully, my home health nurse was able to get the IV in with only one stick. MUCH better than the 12 of last time. The infusion went well. Tastes terrible as always. Thank goodness for Jolly Ranchers hard candy. Help hide the taste.

Now I have the usual post infusion headache. Don't feel too jacked up. I know that feeling comes later. The steroid fog is already descending as well. I hate this stuff.

Another exacerbation

Here I was thinking things were going so well. Actually, they were. Until Saturday when I  started having vision problems and pain in my left eye. I sucked it up and was hoping it would go away......my husband ratted me out to our family Doctor though. Set me up an appointment and in I went. Knowing full well what I would be told.

I have optic neuritis in both eyes. Now waiting to hear from the home health agency to see when they are going to start my infusions. The doc wanted them started today. Doesn't look like that is going to happen. Haven't even heard from the pharmacy regarding IV delivery.

So, I wait.....bad attitude and all

Still here

Wow. I hadn't realized it had been so long since I blogged. The summer has simply flown by. Fortunately, not too many issues with the MS this summer. )BIG difference from previous summers). I've been staying home with the exception of a planned vacation, so I'm sure it's the air conditioning that made the difference.

Dad is doing better. Made a trip to visit he and mom this summer. While the heat of the mid-west this summer has been hard on him, he's been holding his own.

I hope the summer has been good to all of you. You can continue to follow me on HowIfightMS.com  See you there!

busy, busy, busy

Wouldn't it be great if MS took a break when life got tough? We've been dealing with a stressfull family issue for the past 6 months (my pop has been really sick). As if it's not bad enough to deal with that level of stress I had to do my best to conceal my returning MS symptoms from my family. All my family need was to worry about me as well. So, I kept on pushing myself. Past the wall of MS. I think I did fairly well. There was only one day that I was there (in two weeks), that I allowed myself to succumb to the train wreck fatigue that comes with MS. Other than that one day I waited until I got home to really let myself go. I hit the bed and didn't get out of it for three days (other that for a doctor's appointment the day after I got home. I am so tired of MS controlling my life. The meds, the shots, the balance problems, the cognitive issues, the fact that I often have hard time speaking. UGH The list could go on and on.

Fire's Back

I take 12 pills a day (Not to mention my shot) to keep my MS symptoms at bay. We'll they aren't working. The neuropathy in my legs (FIRE) is back, my fatigue requires a daily nap and my hands aren't working right. In addition to joint pain (and of course the back pain that I battle on a daily basis due to an injury almost 3 years ago). I'll tell you, life with MS sure isn't for the weak or the faint of heart. The risk of falling flat on your face (literally) is always a possibility as the disease progresses. My wheelchair and walker have become my best friends. Thankfully my human friends have accepted my D.M.E friends and aren't intimidated by them. That makes a world of difference. I've read blogs where people have lost friends because their so called friends can't accept watching them go through the process of MS and using the equiptment. Thankfully, I haven't had that problem. My friends get me out of the house once a week minimum for lunch, dinner etc. They have become pro's at handling my wheelchair and walker.

SO while my symptoms are flaring up I choose to concentrate on the positive.......my wonderful friends who make sure I am STILL able to have a life outside my home.