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.

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.

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!

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.

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.

The rest of the IVIG...

Third day went well too, so well in fact I went for a walk and managed 25 minutes at a good clip.

Boy, did I pay for that! About an hour after I got back I started the ugly headache and took an Advil. About 5 in the morning I woke with a screaming headache. Ouch. Took an Advil, ate a banana, and put an ice pack on the back of my neck. By the time I got to the infusion center Thursday for my last round for the month I was begging for the headache stuff as a pre med! Luckily it takes the headache away in about 30 seconds.

Final infusion went well but I was pretty weak on the way up and had Dennis escort me as i was afraid I might pass out. I did walk down fine on my own though.

I fought the headache Friday and felt really puny. Some of my buddies at the infusion center said they found the worse the side effects, the better the result and that the results are cumulative. This was a bad one so hopefully I will gain a lot of benefit. Would be nice since Christmas is less than a week away!

Today, Saturday, I feel a bit better but still have flagging energy and an upset stomach. Didn't sleep well last night and that's always a problem. I walked my normal half mile in 15 minutes today and felt better for it and felt some unusual tingling in my legs. The kind I had as this whole MS was starting up. Maybe its reversing? I have my fingers crossed. Please God, give me some energy. I want my life back. Please.

Cheers,

J

One week post IVIG-Thanksgiving Day

I have finally recovered some energy! The IVIG infusions went well and I had a great time at the infusion center, meeting other people with MS and related neurological issues.

Thursday, the last day of the therapy last week and thank goodness no headache last night but I am pretty wiped today. I got the same premeds as yesterday and had a nice infusion. When they went to take the post blood work, I think the girl blew the vein! Afterward, my right hand swelled and got all black and blue. I know I am getting old when this happens. After a week, its mostly all gone, phew.

I slept most of Friday and Saturday, wiped out totally! Attack of the IVIG flu. Sunday I started getting hints of revival and during the week its gotten progressively better. I am not sure I feel better than before the IVIG but not worse. That is good. I am sure I will feel worse when I see the bill though!

Got back some lab results that were a bit discouraging. My vitamin D level has dropped again back down to 38 from 52. That's not great since I have been supplementing heavily with like 3000 ius a day for months! It's time to change brands and get that D level up to 70 if possible! At least my lipid profile is perfect!

I am slowly losing patience with the stiffness and inability to do anything! Arrgghh! I am taking L tryptophan to help with the depression. Trying to rebuild my serotonin stores in my brain. I might switch to 5-HTP if the tryptophan doesn't do it. Hopefully this and the thyroid treatment will get the pain and stiffness under control and I can get off the spasticity medications. Ugh! I so hate drugs!

It's Thanksgiving! We are celebrating quietly at home with just the three of us and my mother in law. It's a gorgeous day, sunny and cool and dry! Hope I can get out today or tomorrow and ride my motorcycle around the neighborhood again. It gives me a sense of freedom and joy.

Enjoy your turkey day, everyone.

IViG Therapy

Ouch!!! And I just thought there would be no side effects! I have now had three infusions of the drug. After Monday's therapy I felt pretty good and actually felt a very slight improvement in pain and stiffness Tuesday morning.

I get pre medicated with antihistamine (atarax in my case since I am allergic to benedryl) and tylenol for potential headaches. Didn't have any problems Monday.

After Tuesday's infusion where I only took 1 Tylenol and half an atarax, I felt really wasted and slept most of the afternoon. As the evening crept on, I started feeling a bit nauseated and started getting a headache, the typical sinus kind with a little tension thrown in. Didn't think much of it and took a Tylenol before bed. During the night I woke up feeling a bit sick to my stomach and head-achy and didn't like it much.

Wednesday, I just felt awful and crawled into the infusion room almost in tears!Samantha, my infusion nurse took good care of me! She gave me Zofran for nausea, ativan for the aggravation, and toredol for the headache. I felt better in 5 minutes and had a nice infusion.

A lady across the room from me heard what all I was moaning about and said, "IVIG flu!" I guess these are normal side effects of the therapy. Everyone there promised the headaches and agony would go away in a few days.

Everything went well until about 9 PM when the headache crept in again. I took a Tylenol before bed but woke up at 4 with the worst headache I have ever had. Even worse than the one I got when i fell off my bike head first into the stone wall on the road near my home going about 25 mph after heading down the hill after the railroad bridge. ugh. Got up and took an Advil and put an ice pack on my head and it was better when I got up at 7 AM. Took another Advil for good measure with my yogurt at breakfast and its under control today. Luckily, I didn't have any nausea.

One more day of IViG this month, then another round mid December. I am looking forward to the benefits and hope they kick in soon, like maybe Saturday? Sure would like to ride my Motorcycle around the hood again. Weather permitting.