mpocciot

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  • mpocciot
    January 8, 2015 at 9:51 am

    Hello Connie,

    CIDP treatment used to be bad for me because it was difficult to get veins. That was the reason it was painful and why I didn’t want to go to the hospital to get my IVIG. Although I knew I couldn’t live without IVIG it was painful to get treatment. The I got a port implanted and now everything is different. A little pain when the needle is inserted and that’s it. I take IVIG every 15 days now and never had to look for a vein again.
    When there are things like that one can have second thoughts about accepting treatment. I have a friend, 59, with CIDP, that tells me again and again that he cannot do without IVIG (3 days per month).
    About work, I think every case is different, but I would definitely no stop working only because of the CIDP. I had to adapt a little bit, but I have not changed my job, still working in the same profession, still traveling (although not as much), driving around to visit customers, walking with them to get to places (although not as fast)… I think I have slowed down a bit, but still able to maintain my job and the same activities. There where times I thought about changing jobs, but I don’t think I could afford the financial impact that could have on my family. So, I’ll keep this job as long as I can, but I’m certainly looking for something else to do after that. I may became a teacher or writer or do something else.
    I would like to encourage you to stick to the treatment and continue work if you can. You will feel better with the treatment.

    Cheers,

    Marcio

    mpocciot
    November 14, 2012 at 12:32 am

    The spoon story is really great. All the other posts have also helped me with my frustration with CIDP.

     

    Thanks a lot,

     

    Marcio

    mpocciot
    April 18, 2011 at 9:29 am

    i wonder What is the max dose one can have in one day? Does anybody know?

    Cheers,

    Marcio

    mpocciot
    January 25, 2011 at 3:34 pm

    Hello Patty,

    Dr said if I want to know what causes it we need a biopsy. I’m not doing that for know.
    I’m in hospital again, 3-day IVIG.

    Thanks,

    Marcio

    mpocciot
    January 21, 2011 at 5:14 pm

    Hi,

    I’m only 40. Used to climb as well; mountaineering was my number one hobby. Today I can hardly climb the stairs in my house.
    I know how you feel. I feel the same. I know…more than that, I fell what CIDP has done to me. I had plans to take my 10-year-old and my 6-year-old on climbing adventures, teach them rock climbing. I don’t know how I’m going to do that. Need to find a way. I wish I could stand on a skate board like I use to, but I know I must not even try…the floor would be the only direction it would take me.
    I know I should be grateful I can still walk, it could be much worse. But I agree, neuropathy does stink! Specially if you have tasted so many wonderful things in your life before it struck you. Like the mountains.
    What are we going to do now? I know I will never climb like I used to. God may grant me the blessing of walking the hills once more, if He wishes to.
    We could look at the positive or negative way, but the “way” is the same no matter how we choose to look at it. And the only way is for us to adapt. Everybody says “don’t let this thing beat you!”. What is the reality? Can we, CIDP people, do things like we used to do? No! Will we ever be able to do it the same way again? Probably not! Has this inability arrived at the expected time in our lives? No. What is the meaning of defeat then?
    …you will choose the meaning.
    We need to find I way not to let this thing destroy us…destroy our capacity to adapt. As long as we can adapt it will never destroy us.
    I hate this disease so much, in a way you can’t probably imagine. But I love my kids so much in a way that you can imagine, I’m sure.
    Once we get too old to do it ourselves we become teachers. That’s our way of staying involved, that’s how we adapt and face the inevitable.

    Cheers,

    Marcio

    mpocciot
    January 21, 2011 at 4:41 pm

    Don’t know how OMINT ended there, sorry. I meant to say immune system.

    Linfocytes are our white blood cells. They are the ones who attack the myelin sheath ([url]http://en.wikipedia.org/wiki/Myelin[/url]) of our nerve cells. Broadly speaking, they are responsible four our CIDP/GBS. At the same time, they protect our bodies from intruders like viruses, bacteria, etc…We can’t live without them but the more numerous they become the weaker we feel.

    Cheers,

    Marcio

    mpocciot
    January 10, 2011 at 2:30 pm

    I have had headaches with IVIG, certainly have had Flebogama as well.
    Tylenol was sufficient to stop them. Might have had 3 or 4 times after IVIG session over a period of 4 days.
    I haven’t had them anymore. I’m on Kiovig now.

    About cutting out on IVIG or decreasing the frequency. I don’t recommend it.
    Every patient is different I know, but something could trigger the OMINT system and levels of linfocytes could get too high sending you into an onset.
    It happened to me when I stopped for 2 months.

    Take care,

    Marcio

    mpocciot
    November 15, 2010 at 7:39 am

    Hello,

    I was lucky!!!

    Woke up one day feeling very weak, thought it was the flu. Went to the ER and the doc said I had a flu and sent me home. I could still walk slowly but had that sensation all my strength was gone. Flu/Cold was never like that before.
    At night I went to another hospital and the first doc, a neuro, who saw me said straight away “I think it is GBS”. He was a man around his 30’s; I’m impressed to this day of how quickly he thought it was GBS, reading the posts here abot how long it took for some people to be diagnosed with GBS.
    A team of neuros joined the first one, I was admitted and lombar puncture followed. Blood tests and all.
    Started on IVIG for 5 days. On the third day I was better, but found I also had pneumonia.
    On the fifth day I was feeling new, “normal”. Went home.
    3 months later, started to notice difficulties when climbing stairs, walking, very subtle.
    Saw the doc again for an EMG and more blood tests. The EMG showed it could be CIDP. That is still the best evidence for CIDP neuro and I have encountered.
    For one year I have been treating with IVIG and solumedrol. Since the GBS in 2006 I have never been to a point I was so weak that I couldn’t walk or stand up. But we stopped the treatment 2 months ago, to see what good it was doing and the result was terrible. I have not been able to walk for 2 weeks, can’t hold things, arms and legs are completely weak, I’m on a wheelchair now.
    I hope when I resume the treatment things will be back to normal.

    Take care,

    Marcio

    mpocciot
    November 15, 2010 at 6:48 am

    Hi Dieno,

    I had a very bad experience being almost paralyzed for 2 weeks in the US, last two weeks. I live in Brazil and went to the US for business. (I had GBS in 2006 and CIDP since).

    I know what you mean about going to work and all, because I feel the same way. But it was only after these 2 weeks in the US, thousands of miles away from home, alone, that it really struck me. For the first time I felt like “I can’t do this. I can’t walk. I can’t get to work or even stand up when I fall (fell over 3 times last 2 weeks)”.

    I’m not sure what the future holds for me (or you). We may get treatment and get better. For instance, when I resume my IVIG/Solumedrol treatment next week I hope I’ll get back to my ” old CIDP me”. But if this is the new “me” I’ll do even more research and learn more and more. Make sure I have tried all I can.
    If there is still no change, I’ll have a new life and learn what I’m capable of doing.

    I hope your condition will improve and you can find some comfort.

    Take care,

    Marcio Pocciotti

    mpocciot
    November 15, 2010 at 5:30 am

    Hello Jim and all,

    Thanks for sharing. Until today I had never heard of POEMS, but it is the next thing I’m going to mention to my neuro. With these conditions is really difficult to know “what one has”. I had GBS in 2006 then CIDP since (that’s what we think). But, I’m not sure now. Could be multiple sclerosis…or something else. Need to make sure the neuro has checked for these other possibilities.
    I was in the US recently, past 2 weeks, almost paralyzed. Very weak arms and legs. I’m back home but can hardly walk.

    I sincerely hope for you and all the others here that have been and are going through difficult times that you find relief. Isn’t that what we all want for our loved ones?

    God bless,

    Marcio

    mpocciot
    November 15, 2010 at 5:09 am

    Hello all,

    I made it home. I’m still not able to walk properly, very weak, even after 10 days of oral prednisone.

    After all those terrible moments away it is good to be home again.

    thanks for all your support.

    Cheers,

    Marcio

    mpocciot
    November 4, 2010 at 9:55 pm

    Hi dJunk,

    I’m from Brazil.
    I’ve been doing my treatment in a very good hospital (I actually enjoy going to that hospital; Albert Einstein Hospital in São Paulo). I did one year of IVIG/pred. The first 3 sessions were 5-day sessions, then once every 3 weeks. I was feeling well, not great, but well, adjusted to my live.

    My last IVIG was around Sept/1-2. I started this new job, lots of travel, planes, taxis, and I became more difficult to climb the steps to board the plane (many airports don’t have fingers). Then, 3 weeks ago I was in the North of Brazil and got diarrhea (one day only). I went to Peru 2 days later. That’s when things started to deteriorate. Called my Dr. and he said it could be lack of potassium (prednisone is known to change the amount of potassium; it has happened before; tendons become very stiff after IVIG/pred). Started to drink lost of gatorade, couldn’t get SlowK in Peru; it became very hard to walk. Got back to Brazil after 3 days, a little improvement. Then, got in a plane to the US last Sunday. At the SAn Jose airport I was already walking very slowly on Monday morning. That’s when I realized something terribly wrong was happening. Then I fell over at the hotel, could not stand up on my own, went to the hospital.

    I told my doctor about the results of the tests I did on Monday. Levels of Potassium were normal, they could not find anything “wrong” and sent me home to the hotel. I fell over again when walking to open the door for room service.

    Talked to the doctor again who prescribed oral prednisone, but I can’t get it because I don’t have a prescription from a US doctor. (I tried at Walgreens. At least a good thing about Brazil, most medications you can buy without prescription. If you are responsible about it and have seen a doctor, I guess it is OK).

    I’m pretty sure what I’m experiencing now is the effect of the “demyelinization” of the nerves, both legs and arms. I’ve lost the capacity on my legs to a point I’m afraid to walk because I could easily fall. At least I made it to my hotel room.

    As soon as I get back I’m going straight from the airport to the hospital already told my doctor, to resume the treatment (that is if I get get better and don’t need to go back to the hospital here).

    Cheers,

    Marcio

    mpocciot
    November 4, 2010 at 12:11 pm

    Thanks to all for your kind replies.

    We stopped to see what good it did. With CIDP there is more than one treatment one could take and apparently we know now that without IVIG/pred things can get much worse. During the treatment I was able to walk fine, climb stairs and play ball with my kids.

    We are always hoping that a different treatment or a new drug will give us our lives back.

    Many thanks and take care,

    Marcio

    mpocciot
    November 4, 2010 at 12:11 am

    Hello,

    I’m not sure. It sounds like a lot to me. I used to get 35gr per day over a period of 8 hours.

    Take care,

    Marcio

    mpocciot
    November 2, 2010 at 8:48 pm

    Hello,

    It is funny that I just saw this posting because my Doc said “since you are going to the US for 12 days, see if you can get AMPYRA, because I think it could help your CIDP”.

    Yesterday I arrived in Santa Clara just to spend 7 hours at he hospital. I’m feeling so weak. I had GBS in 2006, then diagnosed with CIDP 3 months later. But something happened in the last seven days, because I feel like when I had G BS, only not as much weaker. The doc that saw me at Santa Clara Valley Medical Center yesterday told me it could be a “flash” of GBS…Anyway, I’m watching it; can hardly walk.

    How could I buy AMPYRA in the US? I’m not a resident, don’t have a social Security number.

    Please help,

    Many thanks,

    Marcio

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