chirpybirdy

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  • chirpybirdy
    June 15, 2011 at 8:36 am

    I wonder if maybe it isn’t so much the CIDP but a side effect of the IVIG? I am keeping a log to see if the vibration feeling gets worse after IVIG treatment or if it is always even weeks after my IVIG treatment. I feel good today. The vibrations are very minor and almost gone. I am about a week past my IVIG treatment. I usually start to feel really good after one week past and continue to feel good for about two (or three if I am lucky) weeks. But I have only had my loading IVIG and then two other treatments since diagnosed with CIDP so I have not had enough treatments to see any patterns in symptoms or side effects.

    chirpybirdy
    June 14, 2011 at 5:11 pm

    Did the neck tremers ever go away? That is one symptom that is driving me crazy. I feel like I have to massage my neck constantly to make it feel normal. I sure wish it would stop!

    chirpybirdy
    June 8, 2011 at 9:11 am

    I got CDIP after I got the flu shot in Nov 2010 and this vaccind DID contain the H1N1 vaccine. I started to come down with symptoms only 10 days after the vaccine. Other than the vaccine I was completly healthy. Now all I do is go to the doctor and have IVIG infusions. I have never spent so much time in doctor appointments. It is very depressing to think that if I had not had that damn flu shot I would still be a normal, healthy 46 year old woman going about her life. Now I have a very different life and I don’t like it so far! I will never get another vaccine and my 7 year old daughter will never ever get any more childhood vaccines either. They are all poison as far as I am concerned!

    chirpybirdy
    June 8, 2011 at 9:02 am

    Feeling better today. My sisters breast biopsy was benigne so that was great news. My other sister is trying to deal with her problems but having a hard time. Trying to be there for her but having a hard time sometimes just dealing with my problems. I just finished my two rounds of IVIG infusions yesterday. My feet are still somewhat numb feeling but the burning in my hands has subsided and I DID not get the horrible headache with the infusions (yet anyway). Trudging along and trying to find some normal in this CIDP life I have been given. Summer is finally here (it was 103 degrees here yesterday!). My spirts always rise with warmer, sunny weather. Maybe I will get 4 weeks between my next IVIG infusions instead of the 3 I got last time. I can hope. Take care all and thanks for the kind words. 😮

    chirpybirdy
    May 19, 2011 at 5:55 pm

    I did contact Conway, Homer & Chin-Caplan and they did think i have a good case against the vaccine recovery fund. I just got done filling out the paperwork they sent me and sent it back to them. Now I wait and see what happens if I do get to go forward with a case or not. I know this is a very long process and I may not win but it feels good to be doing something. I was wronged by the flu vaccine. It has ruined my life! I was a very healthy woman before the flu vaccine and now I live with constant pain, numbness, not to mention the anxiety and depression that goes along with the CIDP. My life has been turned upside down. I am not very disabled at this point as I have a mild case of CIDP but who knows what will happen in the future with my CIDP. I could lose my job, end up disabled, lose insurance coverage, IVIG stop working for me…the list is endless. So any compensation would be appreciated as I would have a little cusion of money to rely on if something bad does happen in the future.

    chirpybirdy
    May 19, 2011 at 8:42 am

    I am 46 and a female. I did go to my gynocologist and he did a hormone test that does show I am going into menopause. I was just wondering if the IVIG or the CIDP could push you into menopause. It seems weird that as soon as I got CIDP and started the IVIG i started with these horrible hot flashes. I kept a log the other day and I am having one an hour! It is so disruptive during the day and night. I can’t sleep for very long because I wake up so hot. I have a hand-held fan everywhere and am constantly reaching for one. My gynocologist said I could start on hormone replacement therapy but I am afraid of the stuff I hear about cancer down the way. All i need to deal with is CIDP and cancer in my later years. CIDP is enough thank you very much. So i am at a loss. I have started soy capsules and hope they give me some relief. Wow, if this is perimenopause what will full-blown menopause feel like? Yikes!!!:eek:

    chirpybirdy
    May 18, 2011 at 8:49 am

    I have been staying really hydrated. I do not take Tylenol though. I have been afraid to keep popping Tylenol because in the Gammunex info it says that you increase you probability of liver problems if you are taking drugs that tax the liver while taking IVIG. They list Tylenor and Ibuprofin on the list of drugs. I get the one dose of Tylenol and Claratin before I get the infusion and then that is it. Good news is that the headache this time only lasted one day where it was very intense and then the next day it was just a very mild ache…gone today! So running the IVIG at 100 instead of 300 must have helped.:D

    chirpybirdy
    May 17, 2011 at 9:14 am

    No bruising this time with my IVIG treatment. So i guess the big bruises last time were not caused by the IVIG but they were probably caused by me over doing it right after my IVIG treatment. I took it easy this time and did not kneel on my knees for any length of time. I am so new to this CIDP thing and IVIG treatment. I guess you learn as you go what to do. :p

    chirpybirdy
    May 17, 2011 at 9:07 am

    I was diagnosed about 2 months after initial numbness onset. I had the flu vaccine in November 2010 and 10 days after the vaccine my right foot went numb. After seeing my GP and an orthopedic doctor thinking maybe my hands was carpel tunel and my foot was a pinched nerve or something. I took it upon myself to see a neurologist. She did EMG and NCS first thing and said I have moderate demyelinization. So she ordered more tests, she did a whole batch of blood tests to rule out any underlying disease that could be causing the demyelinazation. Everything was normal. So then she recommended a nerve biopsy which I declined. From everything I hear the nerve biopsy is not conslusive and it leaves you with permanent damage and sometimes the pain from the biopsy is worse than what I already have. So she did an MRI of the spine and a Lumbar punch. My MRI was negative for MS and the Lumbar punch showed increased protein in my spinal fluid. So basing her diagnosis on clinical symptoms and all the tests, mainly the EMG, NCS an lumbar punch she said it is most likely CIDP. We did IVIG and I responded to the treatment. So I guess I am comfortable with the diagnosis. But I do have an appointment at the U of MN with a CIDP specialist in two weeks just to get his take on treatment plans for CIDP. I might not switch to him as my neurologist but would at least like to see a specialist to see what he has to say.

    chirpybirdy
    May 17, 2011 at 8:30 am

    I had a IVIG related headache on my first dose of IVIG. The nurse ran 55 grams of Gamenex at a rate of 300 for both days of my loading dose. I got this horrible headache that lasted for two and a half days. It has very intense! This time we cut the dose to 25 grams ran at 100 for both days. I did not get the headache right away. But yesterday it was so painful. It came on at work. I could hardly touch my head. I went to my car to lay down on my lunch hour and try to get rid of the headache. It just got worse. I was rubbing my head and neck and trying to put an ice pack on the head. But nothing would help. I was literally in tears for my whole lunch hour. I had to pull myself together and go back to work. I have used all my sick time for IVIG infusions and doctor appointments so going home was not an option. As the day wore on the headache faded. Now this morning I still have a little bit of a headache but nothing like yesterday. I think it was IVIG related because my neck was very stiff and sore. Hopefully the one day is all i will experience. Like you said, other than the headache i feel so much better than before the IVIG. All my numbness and tingling has disappeared in my feet and I am walking faster and easier. Happy with the IVIG results but these darn headaches are not fun.

    chirpybirdy
    May 12, 2011 at 9:05 am

    Thank you for your encouragement. I feel pretty good today. I had IVIG yesterday for my second time. They ran it in a lot slower this time then they did when I got my loading dose a month ago. No headache this time and I do not have the hyper-shaky feeling either. I have another dose to get tomorrow morning…I am keeping my fingers crossed that i do not get any side effects tomorrow either. I am trying very hard to put this disease in its place and not let it take over my whole life. I think I am fine and then when I am alone in my head late at night because I am awake with insomnia or just anxiety…then my mind goes to the dark side. I have been using my faith to get me through this. I was raised a catholic but in the recent years I have been pretty lax on religion. I have started to rely on my trust in god and my faith again and it gives me comfort.

    chirpybirdy
    May 11, 2011 at 10:50 am

    My clinic did do benedryl and tylenol last time before i got the IVIG so I assume they will again. I am on my third huge (16 oz) cup of water already t his morning. I also keep drinking water through the whole 3 hours of IVIG treatment. I still got the headache last time but with a lower dose maybe I will be lucky and not get one this time. I also over did it last time. I did not know I had to take it easy after IVIG and I cleaned my car only a few hours after my second loading dose. Not this time. It will be feet up and relaxing on the couch today.:)

    chirpybirdy
    May 11, 2011 at 9:06 am

    Pam, I live in MN and am going to the U of Mn in two weeks to see a CIDP specialist. But his name is Dr. Walk. They say Dr. Parry is no longer accepting new patients. I hope this Dr. Walk is a good neurologist too. I am excited to get in at the U of MN’s neurology dept because they seem to be on the cutting edge for treatments. Wish me luck!

    chirpybirdy
    May 11, 2011 at 8:58 am

    I am still very early in this disease. Only diagnosed in January 2011 and onset was after flu vaccine in November 2010. So I will probably progress to that point down the way. It is so scary to me because I don’t know where this disease is going to go. I use to think about my future with fond dreams. My husband and I use to talk about some day retiring in Florida and liviing a nice life. Now all I can do is cry and think about the road I am about to embark on. This uncertanity is driving me mad! I just wish I knew more about what is going to happen to me in the future. Then maybe I could accept this and find a way to live in peace. But I always feel like I am on the verge of crying and the fear never subsides day or night.

    chirpybirdy
    May 9, 2011 at 8:54 am

    Thanks for everyones input. I am staying with IVIG at this point but I was curious about cellcep. My neuro brought up the treatment because I was upset that my symptoms came back in 4 weeks since my IVIG treatment. I was hoping to get more like 6 weeks between IVIG infusions (wishful thinking I know). But I don’t want to have the risk of cancer added to the mix right now. I have enough to worry about with just having CIPD thinking about my future. I am only 46 and my daughter is only 7 so I have to be around a long time to help her grow into a young lady. I have my second IVIG set up for this coming Friday. They are going to run it in at a slower rate this time and since it is not a loading dose I only have to get one infusion instead of two consecutive days. Hopefully she is giving me enough though to help put the symptoms to bed again for a few weeks. I did feel great after the IVIG. I almost started to doubt their diagnosis because I felt almost normal again and stopped thinking about my CIDP every minute of my day for those two weeks. I cried when the symptoms came back because it snapped me back to my CIDP reality that this IS not going away and is here for life. Feeling better today about the whole thing. I just needed to cry to morn my old self and try and accept the new CIDP me. Hard thing though because I was so healthy and very active.

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