Anyone sick Oct.-March (flu like)?
November 5, 2009 at 10:10 am
sorry, no info
AnonymousNovember 5, 2009 at 7:06 pm
I don’t remember getting flu like symptoms while taking ivig…. Quite the opposite…. I stayed healthy the whole time I was on it, and didn’t even catch a sniffle (as I remember) I did experience headache pain and physical pain, I think the latter was due to other factors….
My daughter has been home sick this whole week with cold/flu fevers, cough, congestion, sore throat etc.. The week before she tested positive for strep.. So it has been a long few weeks for all of this… Tis the season for germs, so perhaps, Kevie is fighting off a bug.. Maybe, he can get tested….
I am a little concerned about you, and your well being… It sounds like you are a little frazzled, and I don’t think any one on this site blames you.. I hope you can find some solace and quiet uninterrupted time doing something to rebuild your peace… I understand you want so much to do the right thing for your son, and sometimes the unknown is un nerving… Get the stress out.. We don’t want you to become a firsthand neurological basket case!
I find enjoyment getting outside, and working on things… walking… exercising…. Golfing.. sports… hunting (a little).. etc… You get the picture..
Get better you two… Dean
AnonymousNovember 5, 2009 at 8:22 pm
Yes, I have been having that. I know once I was exposed to someone who came down with severe flu –she was in bed for several weeks. It was not diagnosed as H1N1. I thought maybe my body was trying to fight off the flu. But, I have had it since. We have stretched my infusions from every three weeks to four weeks and I thought maybe that is it. But I seem to have this my second or third week after the infusion, not the fourth. I felt that way all last week, feel good this week. I am due for infusion next week. This is just my second time for four week infusion intervals. When I was exposed to the flu person I was getting my infusions every three weeks. I have worried that maybe I am relapsing. To my knowledge, I have not come in contact with anyone with the flu the last two months. But who knows. I would describe it exactly as you said — body achey, sweaty and no temp and very tired–generally do not feel good.
AnonymousNovember 6, 2009 at 6:39 pm
I have also been wondering if this is a migraine.
To my knowlege I have never had migraines in the past. In August, I asked the Infusion Center to speed me up. This was on Thrusday. On Saturday, I was very nauseous, had a slight headache over one eye, felt very tired and generally crummy. I tried to speak and jibberish was all that came out. I could not get to the words I wanted. I thought I was having a stroke. The speech cleared up within a few minutes.
After a MRI, the neurologist said it was a migraine. Again, the headache was not intense. Since flu symptoms are coming and going and I usually have a slight headache, I have wondered if this is my version of a migraine. Maybe sometime in the spring, I started having migraines? The speed up of Infusion could have caused it to be more intense to affect my speech in August and just flu like symptoms other times.
Could Kevin be having migraines?
November 7, 2009 at 9:49 pm
Kevie has had severe migranes for 3 years at least twice a week. They are incapacitating. I have it on my list of quest. for dec. to ask for a mri of the spine to see if there is an inflamatory process on the spine, perhaps the inflamation is what causes his migranes in addition to the sinus headaches and the other severe ivig headaches. Incidentally, now that we have switched to 35g every 2 weeks instead of the old way of 125g/four days, Kevies headache situation due to infussion has for the most part subsided. I sent away for sarcoidosis info, and I plan to ask the imunol. about that Mon. I also am going to ask him what he thinks about an antibiotic or anti viral.
Dawn Kevies mom
AnonymousNovember 14, 2009 at 12:18 pm
YES. I am dealing with that right now. my other symptoms are at a lull but I ache. I was wondering if it is my nerves growing back. the last bout did the same thing. I have had 4 May onsets and by the winter two times the symtpoms have gone to a lull and I get this. I dont know what is happening just that pain is my main complaint right now. I am starting to pin down patterns.
onset pain-flank and frost bite like pain
during- cramping muscle pain
after- aching and syatica like pain
does kevin have similar complaints? does he have a particular month or time of year for onset? one of the PE nurses siad that they are busier with cidp/gbs in the summer heat vs ttp season in the winter from cold and flu exposure
I am wondering if my nerves are growing back and maybe the pain was masked by numbness before and is now coming through.
also by “frost bite like” I can also describe it like when you are kneeding really cold hamburger and your fingers start to ache so bad that you have to run to the sink and run hot water to relieve the pain. my husband understands that description better.
November 16, 2009 at 1:48 pm
Kevin has flu like symptoms. Yesterday a cold sore developed, today barky cough. I do not think it is a cidp flare. I am most certain about that. He just gets sick from now till March/April. He ALWAYS has pain, just more heightened when he is sick.
AnonymousNovember 17, 2009 at 12:45 am
When the weather starts to change in the fall season I am messed up until springtime. I went to the DR. last week and he put me on medicine to help with the sinus infection I have now. I just finished up tamiflu and before that I had 2 rounds of the zpac. I try my best to stay away from most and still get this every fall until spring.
MOM…You take care of yourself. I can’t even imagine how it hurts you to have a sick child. I mention you and Kevie in my prayers quite often. YOU just have to be a special person and mother. I will continue to pray for you both, and covet your prayers on this end.
God bless you both,
November 17, 2009 at 9:26 am
Thanks for the kind words and prayers. It seems like my entire day is consumed with Kevie stuff and talking to God about things. I hope he will hear me soon.
AnonymousNovember 27, 2009 at 6:09 am
Dawn I’ve been sick continuously this year with a few breaks in between. Before CIDP and IVIg I never got sick, never got colds, flu or stomach issues. Now I seem to be a magnet for them – just woke up this morning with a sore throat and temp of 102… nobody was sick yesterday that I could tell but here I am again after only 9 days of not being sick. I don’t know the cause of the repeated illnesses – my doctor does not believe it has anything to do with IVIg – rather that its just a bad flu year. I am not sure I believe that but have no evidence to contradict him. 🙁
November 27, 2009 at 10:48 am
My heart wants to expect miracles for Kevie. Even a small miracle can make a big difference. I am sending prayers your way to comfort you and to heal Kevie.
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