Thursday, November 26, 2009

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.

Thursday, November 19, 2009

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.

Wednesday, November 11, 2009

Start IViG on Monday

Yay! My insurance company approved treatment with IViG so I start infusions on Monday. I will go Monday, Tuesday, Thursday and Friday at 8:30 AM and be infused until 12:30 PM or later so its going to be a long week.

Hopefully this treatment will give me some function back. Its supposed to reboot one's immune system! And should last a month. I will have to go every month but hopefully not for 4 days each time.

I also saw another Doctor that my PA at the Neuro's office suggested and he validated my efforts to fix my thyroid problems with Cytomel and hydrocortisone. At least I have a guardian and supporter in my treatment plan. As I use the T3, Cytomel, to clear the Reverse T3, I should get past this fibromyalgia and see an increase in energy and a reduction in pain and depression. I just have to stay the course as it can take 12 weeks to clear the Rt3 from my cell receptors.

I am very tired today with the stress of losing my dog, but there is hope for the future! Please pray for me that the IVIG works! My Neurologist believes in it. She is very good too!

On an exercise note, I have been walking half a mile most days. I have done the last 5 of 6 days since the weather has been really nice! 70's and clear except for one humid hot rainy day. I get really tired afterwards but gotta keep those muscles in shape. The keenfit walking poles are a lifesaver.

Sorry it's been so long...

I realize there are more of you checking my blog than I thought!

I apologize for not keeping all this up lately but its been busy with various Dr.s appts and such and those wear me out!

OK today is a sad day because I had to send my whippet, Cosmo off to the vets for the last time. He had developed hemangiomas all over his body and inside his nose. He sneezes blood and it gets all over everywhere and I just cannot clean up all the time. Also Cosmo has gotten so thin even though he eats well. At almost 12 years old, he has had a good long life since I adopted him at 18 months and has been a model dog! I am very sad to lose him but I just cannot bear to watch him bleed out.

So I am crying today, but I will get over it soon. I have lost a lot of pets in my lifetime.