sorry its been so long

    • Anonymous
      January 14, 2010 at 6:13 am

      I’ve been so incredibly distracted with my new computer and drawing pad I haven’t been able to escape to come check in. I’m bad, bad bad girl – I should go sit in a corner (and draw)!

      Anyway there really isn’t much new to report health-wise. I’m still the same but we are at least one step closer to getting me on subcutaneous Ig and thus the potential of meningitis free days. 😀

      I haven’t caught up on how everybody is doing yet but here is a quick run down of my current symptoms and then side effects from IVIg – some of which you might not be aware of…

      still affected head to toe with facial numbness, weak and double vision, difficulty chewing, neck weakness, arm and finger numbness, my trunk is actually stronger thanks to my obsession with sitting up drawing, my legs are stronger too thanks to my AFOs which allow me to stay vertical longer, but they are still numb and still do the twitchy, spasmy thing. I still have a fever that ranges from 100-101.6, I still have autonomic issues and I have recently developed allergies.

      still causes meningitis headaches; light sensitivity, phlebitis, nausea, gastric distress (gas, cramping, huge bloating, fluid buildup), sweating, stuffy nose, fatigue, dizziness, and more twitching. The gastric part is not highly advertised but I finally managed to speak to someone and they admitted IVIg can cause gastric distress – in addition in my research into SubQ Ig they state it right up front in their literature – that it can cause gastric distress. I was hoping to get rid of that but at least getting rid of the headaches will be a good trade off.

      It’s all about the same, no real improvements but not many setbacks either. You might recall I’ve gotten sick a lot this year – when I traveled out of state for Christmas my sinuses suddenly cleared up and returned to their clogged state as soon as we got back in state – thus leading me to believe my sicknesses have been allergies rather than flu – or allergies leading to infections. Believe it or not this is a good thing because one 5mg children’s Zyrtec daily and I feel much better and I can smell again too. 😀

      That’s all I can think of for now – I’ll read some posts and get back with the picture on how everybody is doing. 😉

      Happy Thursday!


    • January 14, 2010 at 6:59 am

      Julie, WELCOME BACK!!! … you’ve been missed. I glad to hear you’re one step closer on your journey to subcutaneous Ig … one step at a time, but I pray the steps are giant steps and made quickly.


    • January 14, 2010 at 10:19 am

      I sent you a PM, add sinuses, frequent colds, brain fog, inability to concentrate to the list.

    • Anonymous
      January 15, 2010 at 12:33 am

      I started reading your post on Thursday, and now it is Friday !!

      These midnight sessions are killers !!

      Sounds like a challenging year. Here’s hoping that all of your Schwann cells start working triple overtime and produce so much recovery myelin that you start feeling better in the morning !!!!

      It’s good to hear from you again. Happy voices make happy faces, happy faces make happy people.

      Thank you !!

    • Anonymous
      January 15, 2010 at 7:34 pm

      Sinuses? What sinuses – they’re in perpetual clog!
      The meningitis tho, I’ve found I’m doing heaps better after two goes around thru a port. Much less painful too in terms of poking and finding veins?
      I’ve had ups and downs and know where you are at!
      I’d looked into the sub-que and got almost dizzy at the option of having to ‘put the needles into myself?’ Ergo, got the port. So far? So good. OK call me a chicken? Yep!
      As for your sinuses? Does your house have hidden allergens or molds? I can’t recommend a ‘testing company’, but, I can recommend one NOT to use in the DC metro area! If you’d like all the web sites I checked out on such issues, PM Me…. More than glad to share.
      Love that zyrtec! It too helps me – A LOT.
      Good also that your mind got on other roads and took it off of the day to day ‘ilk’. It can get a person down? But YOU? Never!
      Remember this stuff doesn’t usually get to our BRAINS! It gets our bodies and we can and do have tools and treatments to FIGHT! Keep up the good work!
      Hope always!

    • Anonymous
      January 16, 2010 at 1:57 pm

      I hope you get approved for the SubQ soon! I’m very interested to see how it works for you.

      I’m glad you are back..even if you have been cheating on us with your drawing pad.