Results from May's IVIg treatments

    • May 10, 2017 at 8:48 pm

      I had IVIg administered on May 1-May 5. Nothing magical and instant happened.

      But, I’m starting to see the cumulative results.

      -Today I was able to go up and down stairs like a normal person rather than side stepping down and one step up at a time. It actually felt natural and not like climbing Mt. Everest.

      -I was able to use the push mower to trim the grass. Tired me out, but I had the strength to do it.

      -at work I noticed I can lift more weight

      -I can bend over and pick things off the floor

      -people say I look better (in the last two days or so) and I feel stronger.

      -I feel mentally more acute, as if a fog was lifted.

      What I still have:

      -my calves are still weak and I have a heck of time getting off the floor. I can do it, but it isn’t pretty. I tried to do a catcher’s squat at work to get something low and I fell over sideways! It actually was kind of funny, as my calves just gave out and I slowly fell over sideways : ) Thankfully no-one saw it LOL!

      -after being on my feet for about 4 hours at work, they start to burn, hurt, and get stiff. And at the end of the shift I definitely limp out to the car. With rest at home it gets better.

      -my hands, as the day goes on still get numb/tingly

      -my legs below my knees still get numb as the day goes on

      -also, I notice that if I step on something, like a hose or branch, my balance is still way off

      -I tried to hit a few golf balls, but my hands and arms shake a bit on the backswing, and I have no power in my legs. I was trying to hit a 5 wood, but I can barely get it a 100 yards. I used to be able to hit it 190 yards.

      I definitely did not have these results from my IVIg regimen in the beginning of April.

      What’s was/is the difference? I’m going to credit it to my new doctor and healthcare provider. They administered the IVIg at a much slower rate. Not only did I feel great after each session (whereas the faster IVIg infusion in April made me awfully fatigued), the doctor said the slower rate allows the IVIg to be absorbed by the body, and thus you get more benefit from it. From the results, I’m going to have say he was right.

      So two weeks ago I was back to using a cane. I could barely lift anything at work and I was having trouble using my hands. I’m very thankful for the positive results.

      Hopefully IVIg infusions every 5 weeks will keep me at this level or help to improve things even more.

      I’m still on 30mg of Prednisone a day, but as I regained strength this week, I noticed the odd side effects, like a buzzing head (yes, it made my the skin on my head and face buzz–very annoying) have gone away. I still have a bloated face and a pronounced beer gut (prednisone seems to move all the fat straight to my stomach), but I’ll take this small victory as well.

    • May 13, 2017 at 12:29 pm

      Thats great to hear that everythings moving along good for you. This will benefit you. I did a 5 day treatment of ivig while in hospital and when i was out of the hospital. I still have residual from the gbs so my dr recomended me to get another treatment of the ivig, i had an allergic reaction so i can no longer take it anymore.

    • May 20, 2017 at 7:08 pm

      Week two update. I’ve seen a tremendous increase in my core strength. At work I can pick up boxes and handle the workload almost like I could pre-CIDP. Overall I feel like I have more vitality. In fact, this Thursday, I played in my golf league. First time I played since September. I don’t have the strength or coordination to hit a 1 wood yet. So I hit a 5 wood off the tee, about a 150 yards. That’s 50 yards shorter than usual, but the bottom line is that I was able to play. That is a big step forward.

      Ultimately, still, if I over do it, the numbness in my arms, feet, and hands does come back and I have to rest up a few days for it to decrease.

      In general, while my strength has returned, I still have that numbness/tingling/pain from my elbows to my fingers and from my knees to my toes. My calf muscles still feel weak as well. And, my feet still begin to hurt after being on them for a few hours.

      I guessing that with the relapse in mid-March, my myelin and nerves were damaged again and it will be a long healing process.

      Hopefully with the next IVIg infusion in June, I’ll maintain my strength and the nerve/myelin damage will begin to heal.

      I’m not complaining in anyway, shape or form. Not having that run down feeling and having the strength to lift items at work is a great start.

      Where I’m upset is with my previous doctor for allowing me to relapse(by not continuing the IVIg regimen), in essence forcing my to once again go through the process of having pain/numbness in my fingers, which I had pretty much gotten rid of by the end of February.

      I do see my new neurologist this Tuesday. It will be interesting to hear his take on my progress.