Amberzakahi

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  • September 1, 2014 at 1:06 pm

    MACKAY1 thank you for the info and advice about my next appointment. I laughed when you mentioned that your medical records are like novels because so are mine 🙂 Jllcidp, Sorry to hear about your daily struggles too, I know it has really helped me to hear from you guys struggling with the same thing and on a journey struggling also with our mental state, its seriously a mental battle because it takes a lot to keep it together and to keep it going, I know mine really is. I dont know what has been happening to me this last week as im waiting to get into the neuro, ive been feeling extreme back pain and tingling in my arms and legs, similar to the symptoms of my two last onsets. I have PTSD so I am trying to be realistic about this and not think that it could be another relapse but im in a great deal of pain not like my regular daily pain. It is possible that i could have an injury not related, but Last night i could not sleep because my back was excruciating and ive been have tingling pain in my legs and arms as well. Im hoping i have a serious pinched nerve but with this disease in the past when things started i thought it was everything else like “pinched nerves” when in reality it was setting it. Im keeping my mind busy with my kids while resting in bed or on the couch trying to make it through this, thank you MACKAY1 for sharing about accepting help for my kids, I really struggled with that the fist couple years but just lately ive really been able to really work on it. THANKS

    August 29, 2014 at 5:31 pm

    Thank you both for your responses, i cant tell you how good it feels to talk to someone who knows exactly what ive been through. Im sorry Barbra that you have had it for the 5 time! I cannot even imagine. And MACKAY 1 I know what you mean about researching CIDP, Ive done the same thing because I keep getting people telling me that I should be fully recovered which is frustrating considering I struggle daily with pain and weakness to the point where my husband has to work from home and take sick days to help with the kids because they are at such a young age they need everything done for them. It is so hard to climb stairs or squat or anything else that involves my legs and arms. Like holding my son for too long i feel weak. I dont mean to complain, but im 28 yrs old and people in my life just dont understand, they know what ive been through but all they see now is me not in a wheel chair or having to be in the hospital so they think im fine. But little do they know that EVERY single day of my life is a battle and a struggle, to not fall into a deep depression or allow my pain to take me over. I am finally seeing another Neurologist because my last one told me that I should be fine now and acts annoyed with me. Ive had the Doctors tell me I was a hypochondriac. So i havent seen this one yet but im hoping that this one will not have a God complex and KNow more about this disease instead of googling it! Do you have any suggestions on what types of things i need to talk with the Doc about? Im new to this and most docs havnt known much and have just passed me on to the next.

    August 26, 2014 at 10:16 pm

    Thanks for the Imput. We just moved to Seattle so im in the process of trying to find a good Neuro. I also have been diagnosed with Another autoimmune disorder. Before i got GBS, 1 year before, i contracted Chickenpox as an adult, not shingles but full blown chicken pox for the 2nd time that turned into mild encephalitis. So Docs think something else may have been going on before hand. Maybe my fatigue, muscle and nerve pain is from this other disorder, they are not sure what it is, but at this point i may never know because docs dont have every answer but im trying to narrow it down and hear every persons individual experience, its helping. I have seen many Neuro’s and docs and have heard several different opinions. But for sure GBS because of the unmistakeable onset of paralyses in 72 hours and nerve testing. I’ve heard of some people who dont completely recover from GBS. But I will ask at my next appointment about CIDP. Good to hear that your recovering. ANd thank you for your response