Sunday, May 23, 2010

More Ampyra...

I am giving it another try after a few days off. Now that the weather is in a more stable pattern, I will try taking only one pill a day, starting today, now that my IVIG flu is over, probably about 10 AM so it will last through my working hours and be gone by the time I hit the bed at night. That way I might sleep and gain the benefits of the drug. So many people on Patients like Me forum are having great success with Ampyra.

I have to say, it does help me move better. Legs feel less like concrete pillars and more like legs. Some how I will figure out a way to lessen the nerve pain, but it might take care of itself after a while. I just cannot stand not being able to walk the block, or go out with my family and friends.

Everyone is having a great time in Galveston this weekend and I am stuck at home watching the Astros try to win a game. Unlikely but possible.

Tuesday, May 18, 2010


Well, finally after a month, I finally got the drug, Ampyra. I started taking it on May 5, so its been one week. One week of ups and downs and finally a major down. I am really disappointed and sad that I am having such miserable side effects and that its really making me feel worse than before.

It does help me walk a bit better, but makes all my nerves burn like they are on fire and makes the spasticity worse. I seem to have a good day then a rotten day then a good one then rotten. Today, if you haven't guessed is awful. I cannot get off the recliner and am very discouraged.

Plus the AC died over the weekend so its hot and stuffy but tolerable with numerous fans in the living room which we move to the bedroom at night. I haven't slept well the last week either. The nerve pain wakes me up at 2 or 3 in the morning and I don't sleep well after that. Probably why I am so tired and sad.

So much is happening in the family right now and it makes me so sad to miss the fun because I can hardly move. Prom is this weekend, Graduation next weekend with family coming in to join the celebration. And I cannot do anything to get ready. Physically I am going down hill and hating it.

Just found out my PA at the Neurologist office has left. She was my rock. The other PA left about a month or 6 weeks ago and I loved her too. Now what? I am scared I have no Neurology support and that is unnerving.

My hands hurt. I have to go before they seize up totally. But the magnolias are in bloom!

Saturday, May 1, 2010

May Day!

Wow, I missed the whole month of April! I have been really busy with video projects and we took a short vacation in the RV to Medina so Dennis could ride his motorcycle with the boys.

Weather in Medina was ideal; cold night and warm days, dry air and clear skies! Such a great change from Houston with its muggy weather. :) So glad I went even if it about did my knees in getting in and out of the trailer.

We took the dog and he was a perfect traveler and companion, very undemanding and easy going.

While the boys rode, I worked on my pictures for the tennis team and video project for a friend's daughters graduation. I was busy. I also rested a lot. After the boys got back, Dennis generously took me sight seeing. There were deer, antelope, buffaloes, zebras, and other exotic animals behind tall fences on a few large ranches. The wildflowers were vibrant and plentiful too. Bluebonnets were finished but coreopsis, purple verbena and other yellow flowers took center stage. Gorgeous.

Now back to working frantically on video projects.

Health wise, I missed a session of IVIG and am feeling it. My body hurts all over and I am a bit depressed about that. Stiff and sore is my motto these days. Went to the pain doc who prescribed Trileptal for the pain so today I am giving it a start. Didn't want to do it while I was in the creative phase of the tennis banquet video in case it brain wiped me like Neurotin and Lyrica. Now that I am working only on technical stuff for the DVD, I can handle being a bit brain dead and sleepy. And I am.

If this doesn't help with the pain, I also have a script for Duragesic patch, which is fentynal, a synthetic narcotic like morphine. I hope I don't have to go that route.

This week I have an appt with a Psychologist who only works with chronic illness and pain patients so I hope we can find a decent perspective for me. I am depressed I have to miss all my daughters events outside since I cannot stand the heat and cannot stand for any length of time.

That's enough whining for now. I need to get on with work.

Thursday, March 18, 2010

Quiet but productive week

Not a whole lot happening this week. Lots of flowers blooming since Spring has sprung. The magnolia tree is about finished and the Texas Mt. Laurel with its grape bubble gum smelling flowers is in full bloom. Blue Bonnets are blooming as well. Gorgeous. Louisiana Iris are next with the Indian Hawthorn. Am taking a ton of photos. Most of them are posted on my facebook page.

Gardening in the sun is probably my highlight. Planted out my herb garden with Parsley, Sage, Rosemary and Thyme.. hmmm sounds like a song, if you are old enough to remember it. :)

Also planted dill, fennel, basil, Russian tarragon, and a few hot peppers. I grow and dry the hot peppers then grind them into powder and use in Mexican food dishes and as a counter irritant in hot tea for sore throats. Along with a little ginger to cool the heat.

Tomorrow I go in for the third cervical injection series but have to admit its not changed a thing so far. My hands are still numb and hurting. I might have better mobility in my neck though. I sure hope the lumbar stuff is more effective. This is a tough way to live.

Exercise wise I have walked consistently day after day for 30 minutes at a time. Seems that is as long as I can go, but my speed is increasing and I cover a few more tenths of miles each week. This is some kind of pokey progress, but it keeps the blood flowing and fluids moving and attitude good. I sleep pretty well now.

Tuesday, March 9, 2010

2nd Cervical Injection

It was a bit of a chore to be somewhere at 10 AM without eating breakfast, forgoing coffee, and not drinking a good liter of water since getting up at 7! My poor stomach was rumbling and complaining the whole time!

And I had to wait an hour to be treated as the pain clinic was backed up. I guess an early patient had some issues. I bet it was the lady I saw stagger out with dilated pupils and not talking coherently. I was the last one of the day.

This time the needle stick in the hand went well and doesn't appear to have blown the vein. I hate sticks in the hand. Hands, especially my numb ones, are really sensitive. The nurse did a grand job though. :) Maybe because she let the alcohol dry well first. :0

The procedure only takes about 10 minutes and I didn't feel anything till I got home and my neck where the Doctor went in with the needle, around my T1-T2 vertebra, is sore this time. Last time, I had no issues after. Today I have a bit of pain at the site and have ice on it. That helps.

I came home, ate both my breakfast and my lunch and crashed for 2 hours in my bed. Phew! I got knocked out hard today. Drank my coffee at 3 pm. It has helped the very slight headache lurking in the back of my head.

On a good note, the sun is out and the high reached 78 degrees here! Wow. I want to go for a walk but the post procedure instructions say rest for the rest of the day and today I feel like I should. Dang, well, hopefully tomorrow will be as pretty and nice as today. The weather report says we could have rain in the morning. Please be lying!

Our magnolia is spectacular. I would estimate about 2-3 more days before full bloom, so I better get photos as quickly as I can. I love this tree. Each year it faithfully provides a splash of beauty in the early spring when nothing else is pretty, before the trees leaf out too. Each year it grows bigger regardless of the weather during the year. The saucer magnolia, given good drainage, is a true trooper.

Friday, March 5, 2010

Neck (Cervical) Injections

Well, I did it on Monday and other than a painful needle stick in the hand for the conscious sedation, I didn't feel a thing or feel bad afterward. Now that its been the better part of a week since I got stuck, I do think I have a bit more mobility and less pain in my neck.

I have recovered from last weeks IViG pretty well even while fighting off a cold and sinus issues from very heavy week of tree pollen. I have walked twice this week over thirty minutes... actually 32 each time and have gone farther with less pain and fatigue than in weeks past. Usually, I wonder if I will be able to make it back from my walk for the last 1/4 mile or so but have spent these last few days wondering if I should try for another loop around the block. So progress is being made, step by step, stride by stride. The UPS delivery guy, fondly refered to as James Brown, commented that he would never know I had any walking issue by watching me pole and hoof it around the hood. That was a nice compliment!

The flowers are starting to bloom around the hood so I take my old point and shoot nikon on my walks. The nikon is small and light enough to fit in my pocket so it doesn't have to hang around my neck! So now I carry poles, camera, pedometer, and cell phone. I should wear my motorcycle fanny pack to carry all the stuff! Actually, this photo was taken with the little Canon 20D.

Next week is Cervical injections #2 in series and of course IViG. Ugh. That means I will be down for the count on the weekend. Oh well, not much happens here on weekends since my dear daughter is 18 and off with her friends, not needing Mom for much.

Had a Neurologist appt Tuesday and of course she lambasted me for not taking enough Valium. I did tell her I did up it from 2.5 mg a day to 3.75. She just rolled her eyes. LOL. I don't want to be on 80 mg a day like a lot of folks since I fully intend to get better and get off these drugs.

She had called the company that makes the "bird poison" Ampyra, and they are not marketing it yet to the neuros. But as she has at least one other MS person clamoring for it, she will keep on the company to get a rep out as soon as its available. Interesting. Well maybe next month for that.

Hopefully with that drug and the injections in my neck, lower back and butt (piriformis muscle) I will get back to more normal life and be able to walk better and best of all, handle the heat when it comes this summer. Fingers Crossed!

Sunday, February 28, 2010

IVIG Blues again...

Spring is coming... The pears are budding up!

I continue to suffer terribly for three days after the infusions, whether its 2 days or 3. This time I sailed through each treatment day and kept up with my walking and exercising. It really hit me Friday morning with fatigue, pain and stiffness. I did manage to wimp my way through Pilates training then collapsed and slept most of the day. I had been walking 30 minutes before the treatment which was so good for me and was building up weight and stamina and some muscle.

Saturday I full expected to perk up in the afternoon, but had to drag myself around the block. It took everything I had to make it in one piece without calling for assistance. How weak is that? i am trying so hard to improve but its two steps forward and one step back. Not exercising will cost me some muscle and kill my appetite. I still need to gain about 10 lbs. At least I have put on 5.

Sunday today. I woke up congested and feeling fluey like I was getting Dennis' cold. I kept trying to shake it off and do things, and failed. I sure hate losing 3 days with IVIG Flu to this treatment each time, 6 full days a month, but what else can I do?

This afternoon the sun came out but the temps never got up to the mid 60's like they said, instead hanging out around the 60 degree mark. With the wind, it feels like about 45! I am skipping the walk today. I just don't see it doing me much good. I did do my weight lifting and as much stretching as I could but non of it was comfortable. Advil didn't touch anything but the headache. At least that part is over.

Tomorrow I go for the first of the cervical injections if I wake up feeling semi human. I hope I am not too sick to go, because this course of treatment might really help the pain in my hands. Then the lumbar for the back, legs and feet. Not going to be a fun month but hopefully it will all be worth it.

Tuesday I see the neurologist again. I hope she has some information on Ampyra.

MS marches on. Not fun. Not at all.

Sunday, February 14, 2010

IViG Flu - Valentine's Day

I am a lot better today and think the IViG side effects are about over. Phew! Yesterday was so depressing and horrible. Today I woke up with a headache but an advil and a 25 minute walk took care of that!

It seems like the bad stuff lasts for 3 days regardless of how many days I do the infusions. Well maybe it is worse with the 3 and 4 day a month at a time stuff. I will have to be a bit more diligent in recording the side effects as I go along. I have next week then have the 2 day treatment again on the 24th and 25th. We will see how that goes before I make a decision on which plan I like better.

The sun came out today, Valentine's Day, which makes me feel better no matter whats going on. It is also about 70 degrees today as well so I could walk in sandals and short sleeve shirt instead of bundling up in a parka, gloves and a hat! Yay!

Saturday, February 13, 2010

Incredibly Depressed

As the weather continues to be gloomy, cold and rainy, I am feeling so depressed today. My family is out of town this weekend so I am alone at home.

I hurt all over and have an IViG hangover as I call it. Only had 2 days of IViG this time and will repeat in 2 weeks. I figured the side effects would be lighter and easier but it seems not to be true. Or this batch of the treatment was stronger or different. I escaped the bad headache but feel so fatigued and tired and cannot shake it.

So I sit in my recliner and watch TV and cry every so often. I wonder if I will ever feel well again.
What a drag. Maybe the sun will come out this afternoon so I can walk, or rather stumble, around the block.

I am hoping the pain doc can relieve some of the pain in my arms and hands and neck. Then we will go on to the lower back. Without some of this pain I am sure I would be less depressed.

And Ampyra will be available in March so hopefully my Neuro will let me try it and that too will help with fatigue and spasticity. There is hope but today I just don't feel it at all.

So I will wrap up in my blanket and keep warm and watch the olympics when they come on.

Monday, February 8, 2010

Neuro Appt and more....

February 1 I had another appt with the PA at the Neuro's office. All my tests were fine and I got a new prescription for wellbutrin to see if that helps my pain, energy and mood.

I just love the PA's as they take so much time testing and talking and such.

I tried the wellbutrin for 2 days and didn't like the way it made me feel. I will try it again in a few weeks. I want to be as stable as possible for my appt tomorrow with the pain doc.

Stopped the Elavil at night in anticipation of starting the Wellbutrin. I didn't realize how much the Elavil helped till I stopped it. Slowly the pain and more stiffness crept back in and I felt more discouraged than normal. Of course that could be the IViG wearing off... So I started back on the Elavil at 5 mg at bedtime. I also restarted the LDN and I have been sleeping really well for past few nights. Had some rough dreams due to the LDN but they will taper off in a week or so.

I did 2 mg for a week then upped to 3 mg and have not noticed anymore stiffness than normal. I am just rigid as can be regardless how long or craftily I stretch.

Did acupuncture Saturday afternoon and its helped a lot. My shoulders, trapezius muscles, are locked up tight. Thats where I carry my stress. I hope the pain doc can recognize this and do something about it. That and my danged sacroiliac joint area. Oh what I would do for a pain free day. I know what I would do... Just overdo it and be back where I started.

Lifted weights several times over the last week and it helps a lot. My danged hands are getting weaker and weaker though and that bugs me.


Sunday, January 24, 2010

Ampyra-Fampridine SR - Finally approved!

I cannot wait! This drug, originating as a bird poison in Russia(?) has finally been approved by the FDA.

The majority of persons taking its precursor, 4-AP, have had almost wondrous improvements in spasticity, walking speed, pain, heat intolerance, and fatigue. I cannot wait. I don't care how much it costs, or if my insurance will help with it, but for less spasticity and stiffness, I am all for it. I will take a second on my house, sell my motorcycle (not really) and option my second born child (Only have one and she is not for sale) to get this drug. This gives me more hope than I have had in a long long time. Well only 20 months but it seems like forever.

Bring it on! Ampyra. Be the answer to my pain and stiffness!

Thursday, January 14, 2010

IViG the day after

Ouch! I only thought I was going to get off easy this month. Not so.
Today I woke up with stomach ache, creeping sinus crap and that headache is starting up too. I have hydrate and keep telling myself "Its only temporary!"

IViG also seems to make some of my MS symptoms worse for a day or so. My numb hands are about useless today. (Thank god for the backspace key and spell check!) Nerve pain is horrible in hands and feet and my chest feels full and congested. Hydrate! I had to take a half a baclofen for the muscle spasms too. Oh well, I just thought I was done with Baclofen.

So its a sofa day today with as little typing as I can get by with. More later.
My family is off to London. Sniff, Sob, Sigh. Ah to enjoy the peace and quiet.

Tuesday, January 12, 2010

An easier round of IViG?

Well, I crashed and burned about 4 days before this current round of treatment. My good energy just petered out leaving me depressed and restless on the recliner. Its amazing how fast the stuff rejuvenates me. After one day, I walked 25 minutes and sleep like a baby.

Today, the second day, I felt a little depleted after the infusion, but I did not go as well hydrated or a full as yesterday. I did take short nap when I got home that did wonders refreshing me. I walked farther today than I have in almost 18 months! 35 minutes and over a mile and didn't even come unglued when I got home. Must be a great batch of IViG.

Tomorrow is the last day thank goodness and let's keep fingers crossed I can maintain my energy and avoid the IViG flu. Since I am getting a higher dose each day, I kind of expected to be much more wiped out than I am. Maybe I will avoid the crash altogether!

Caity and Dennis head out for London on thursday about noon to make a 4 PM flight. My sister in law will stay with me and my mother in law will be around as well as my best friend, Deb. While the cats away.... let's hope we can get the bedroom shades made. Its getting lighter in the mornings and harder to stay asleep.

I have pretty much weaned off the baclofen, finding I really don't benefit from it much at all, but then I didn't take much of a dose at all. Just another brain wipe drug. Sigh. Way over medicated but now feel better with just my morning 2.5 mg Valium and 2.5 mg Elavil at night. 5 HTP helps me sleep and I believe my fibromyalgia is better so the thyroid must be better too!

Am going to change the IViG to 2 day twice a month. All my infusion buddies swear thats the best way to do it to keep energy up and IViG flu down. :) Thanks goodness I am such a light weight I can run it in 2.5 hours. It will be about 2 hours when I change 2 twice a month. Yay!

Now if that danged cardinal will just shut up and quit pecking the window with his beak at daybreak. Sleep is what I need most.

Wednesday, January 6, 2010

Just another day in the hood...

Why is it I only seem to post when I am feeling rotten? Maybe its because I have more get up and go other days and don't sit glued to my recliner feeling sorry for myself and trying to escape the pain.

Anyways, today the weather is changing back to gloomy and cloudy and my joints and muscles sure can predict the changes in advance. We had several great days of sun and high pressure and I got lots done around the house. Took down Christmas, redecorated the living room by moving accessories around and started faux finishing some candle sticks for the front hall that had no personality. I expected to finish them in one day but my numb hands gave out and its now day three with at least one more to go. :) Oh well. Better something than nothing.

A good old friend from my tennis days came over bringing lunch at noon and she proceded to entertain me with hilarious stories of her life. Everything to Marilyn is an adventure and she will spill her stories with very little prodding. I thoroughly enjoyed her company and the homemade tomato soup and chicken salad.

I feel the IViG losing its punch. Hopefully I will have enough energy to finish up all I have planned for the week mostly consisting of winter clean up and reorganization. January is usually the month I clean up the computers doing back ups of data and then opening the boxes and blowing out the debris. I hope I can manage it this year. Lets hope my hands and lower back cooperate with the screwdriver to get into the cases. (Yes, my box is 8 years old and still needs a screw driver to get into it!)

IVig Next week in three days only. I might change it to 2 days twice a month. We will see. One pop of this should make my deductible for the year.

Later in January when my husband and child return from their 6 day trip to London, I plan on seeing a neurosurgeon and then a pain management clinic to see if there is anything they can do to get rid of this constant pain in my neck and lower back. The world would look a lot brighter if I didn't have to suffer all day everyday with pain. Ugh. Medication, as I have found out, is NOT the answer as it just has horrible side effect and wastes my brain.

Have started doing a picture of the day on facebook to try and keep my photography skills up. Creative and technical. On a gloomy day like today it was tough.