Stacey,
Sometimes things in life can get so over whelmimg. It’s raining in Spokane this am and it fits my mood. I’ve always forced myself to have this positive attitude, but every once in awhile I think you need to have a melt down. As if the day to day trials we deal with while living with a chronic disease isn’t enough, sometimes life throws us a few sucker punches. Definitly go to your doctor and let him know how you’re feeling, not only the physical symptoms but how all of the stress you are under is making you feel.
Stress and lack of sleep is horrible on a healthy body, it’s going to make one of us worse. Take care of yourself! Except any offers of help and come vent to us as often as you want. If you need to have a melt down go ahead, every once in a while you’ve got to let go; keeping it inside and over doing it is only going to make you feel worse.

My neighbors just got a new kitten who lots like the tabby, he has found his way into my yard. Himself is about 17 pounds now and not impressed with the new kitten. Pretty funny yesterday as I was out weeding first ran by my moose of a cat chased by this tiny little furball. Brave he’s not!They’re so cute and if nothing else keep us amused.

Alex,
I have Lewis-Sumner variant, steriods don’t usual work but I tried them for about a 6 month period anyway. Was doing the solumedrol IV, 1000mg every 4 weeks. They did help a little but the screamin’ meanies I got with them wasn’t worth that little bit {not so bad for me I guess but horrid for everyone around me}. I did blood work constantly but the only real damage I received was quite a bit of bone loss {this was with calcium 600 D, 3 times a day and flosamax once a week}, and a twenty pound weight gain.
I’m now doing 1000mg of Cellcept twice a day plus IVIg every 5 weeks. The only problem I have with the treatment now is the aspetic meningitis but as long as I pretreat before the infusion I can keep that down to a dull roar. I’m not out running any races but it’s kept the CIDP to where I feel I can handle it. Everybody is so different, it’s hard to know what to try and what not to. Good luck with what ever you try.
Pattie

I’ve learned to be careful of anything I put into my body from OTC meds to natural cures, with all the different meds I’m on. I got really ill from a Sobe drink, all it took was once. I’ve a great primary care and we decuss it first. She has me taking a few suppliments but it’s better to ask first.

Jan,
The waiting must be terrible. You have my prayers and hopefully all the worrying will be for nothing. Take care of yourself and keep us posted.
Pattie

I figured since I only go in one day every 5 weeks it wasn’t worth the trouble. The nurses at the infusion lab are great, always getting me on the first try. I want to go home, take off the band-aid and forget about it til it’s time to go in again.

I know they suggest lots of water before and during but lots of water is a given with me anyway especailly when needles are involved, I’ve some veins that aren’t the easiest to get to. Anyway it’s standard at the infusion lab I go to to give the benadryl/tynelnol combo, helps with the side effects. I’m a problem child so I take the ‘roids orally before hand, the nurses told me they had one other person who needed them with the IVIg but they just put it in the IV.

I too get the aspetic meningitis with the IVIg, along with the benadryl and tylenol, I take 4 mg of Dexamethasone before each infusion and for a couple of days after. The IVIg works for me where other treatments wouldn’t, so a little steriods every 5 weeks seems like the lesser of the evils. I think dealing with the CIDP basically has turned me into a lab rat, always something new to try, a new symptom to deal with. I go along hoping to see some improvement, or an easier way to deal with the disease. Once in a while we hit on something that works and it makes it worth the trail and error process.