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February 12, 2012 at 3:33 am
Thanks Lori! interesting about the prednisone! I’m not sure if they would do that or a different immunosupressant first?? I’ll defintely be asking! I feel like the IVIG is working better today (10 days after)… Do hormones have any effect on CIDP that you have heard?? I have noticed there are certain times where my symptoms flare a bit (the overall weakness and the speech/swallowing esp)..
Also, interesting you mention weight loss! Have you had weight loss issues with all of this?? I lost 16lbs initially, in only a matter of weeks… i was STARVING all the time.. I told my husband I literally thought I was going to starve to death…. all I did was eat SOO many meals a day, in th middle of the night, protein drinks you name it and continued to loose! I also had hyperactive intestines during that time.. i guess malabsorption of some sort… Anyhow, with this last flare- the first symptom was a 2 lb weight loss and intestinal flare.. followed by exacerbation of neuro symptoms.. I have been gluten free ever since the onset of this whole thing just in case..I also rarely have gotten sick, same thing my entire life I always seemed to be the one that never got the illnesses other people had.. but that has changed the past two years, with pregnancies etc..
February 11, 2012 at 8:49 pmDick S- I couldn’t describe the numbness better!! I am the same way.. it feels like I have thick socks on – though they are all the way up to my face!!! 🙂 I guess since It shows up on the neuros exams each time (not on the NCV at all, but their pin prick, vibration and cold/hot) they seem to understand. when they ask me if my toe is up or down, I looked at them since I didn’t think it was up OR down! I thought it was in it’s normal neutral position! .. this stuff is crazy!!! Are all of yalls reflexes diminished? I’ve always had brisk reflexes (i’m a thin female, which apparently they say has something to do with it).. and they are still normal/brisk, but apparently my arms are diminished and sometimes unattainable.. though I sware that varies from Dr to Dr SOOO much.. I could never be a neurologist.. too much subjectivity!
February 11, 2012 at 3:25 amI get small blisters on my palms and feet, and eczema patches about the size you describe on my legs and trunk from the IVIG… I haven’t had any sun exposure (though it does sound nice), not sure if that’s the same thing as you have or not. I took pepcid (it helps with allergic reactions) along with benadryl before and for 48 hours after my infusion this time, and have had less of a reaction.. (less of a skin reaction and unfortunately less improvement this round too 🙁 )
February 11, 2012 at 3:22 amThank yall both so much!! I know, it was hard not having this forum! I can’t figure out how to message individuals either… How do I even send you my email address without posting it on here for everyone to see???
I know with the first round of IVIG, i thought It might be working, but then I thought it might just be placebo effect , since i soo badly wanted it to work (without a firm diagnosis in place I still feared and honestly still do fear some bad case scenerios)..but then I felt it start to wear off (around day 14 or so) and realized IT DID work…. phew! I still can’t get over the 2nd round – AMAZING! But, it defintely started wearing off at day 15 post infusion
I’m glad to hear that others seem to think it wears off quicker or isn’t as effective when sick.. Have yall gotten sick more frequently being on immunosuppresants? I am only on 30grams, I wonder if going up on the dose would help any as well as increasing frequency? Did yall try steroids? I just hate the thought of steriods…ugh so many bad side effects, but if it can help I’m all about it!
Shellbones- you mention less fasiculations…it was the strangest thing, about 10 days after my last IVIG infusion, I was sitting down one evening and thought something seemed odd (besides the HUGE smile on my face that i felt so good).. I realized that I wasn’t twitching!!! For the first time in TEN months – NO twitching!!! for about 10 days I didn’t feel a twitch, and it was just odd – in a GREAT way!The worst part for me is my speech, no one can hear my slur … but it’s defintely there along with difficulty swallowing/odd sensation swallowing.. i had NO speech issues for three weeks after my last IVIG… It makes my mind go back to the motor neuron fear (despite THREE clean Emg’s.. I still can’t shake the fear). my face has been completely numb for the past week since I feel like this “relapse” started.. it’s all so strange!
I have my follow up appointment tuesday, so i’m curious what they will say! Thank yall!February 10, 2012 at 3:51 amI don’t know anything about this either.. I know people with CIDP are more prone to other autoimmune issues as well.. Your in my thoughts that things will go well for you!
February 10, 2012 at 3:49 amHappy new year to all of yall! I agree, I have really missed being on these forums.. Its so nice to “talk” to people who I can relate with! And i’m sure my hubby is glad when I can talk to other people about all of this too 🙂 Ahh to travel does sound NICE! I think we all need a vacation after I know one STRESSFUL 2011!!! Hope 2012 brings many great things and better health to all of yall!
February 10, 2012 at 3:35 amLori- I had sent you a message on the old forum (this new one is gonna take some getting used to for me), I have been wondering how it all went?? How was the hospital stay and PE? are you feeling well?? I am hoping that it kicks in and you start really noticing a difference!
January 7, 2012 at 3:59 pmThank yall all so much!!! I really appreciate all of yalls help!
Thanks Shellbones!! I am a little nervous that I havne’t heard when my next treatment is (my appointment was thursday and they ordered it then, the home health was supposed to contact me, but it’s saturday and still nothing – so I’m 3 weeks 1 day out from when i started the loading dose. I hope it will be in the next few days though!Kelly- thank you!! I’m not sure how many grams I got as my loading dose- they did do it in 3 days though, So i’m not sure if they gave me a smaller dose or really packd a lot in a short amount of time! They are trying to do it through home health this next dose… just waiting to know when! I hope I don’t need another loading dose, but I have wondered the same thing – it woudln’t hurt right? I’ll do that forumla to make sure my maintenence dose is right too.. thanks for that! I weigh 124lbs (lost a lot of weight when I initially got sick with the intestinal stuff after the IUD/blood transfusion fun). When I looked up toxic neuropathy looks like it can be caused by toxic substances and drugs, which isn’t the case with me (unless they seriously forgot to tell me something!) I think maybe that was just the code for billing – that it is inflammatory and toxic.. not sure if they can just select inflammatory.. They also have CIDP as a diagnosis now too.. After being in the hospital for a week the idea of being at home for treatment sounds GREAT! I will just tell the nurse to go SLOW and they also ordered IV fluids to go with it to prevent side effects too!
Thanks lori! I’m excited to think that I will hopefully get better, or at least not worse! It has been SOOOO stressful going through the unkown, especially fearing far worse things!! The one big downside to IVIG appears to be cost- we just got our bill summary from my hospital stay and WOOOOOWW!! I had NO IDEA that it would be THAT expensive- i kew it wouldn’t be cheap, but it was A LOT!!! Hopefully insurance will be paying for it all!! goodness! It worries me that we could meet our lifetime maximum fairly quick with IVIG treatments! but as long as it works, we’ll do what we gotta do!
Thanks again yall for all of your help! I REALLY appreciate it!January 5, 2012 at 10:39 pmjgl – sorry to hear you are going through this, none of it is fun!! My dr said they can add cellcept or steroids if need be, but those can have more side effects than the IVIG.. so we are planning IVIG every 3 weeks, inconvient yes, but if it works i’m ALL for it!!!
as far as the sleep at night goes – i have the same problem, i went months and months not sleeping. I would go to sleep instantly, but wake up constantly with the limbs asleep sensation ALL NIGHT – i never slept! I am now taking lyrica, and must say it has saved some of my sanity! No sleep, plus a crazy illness can lead to one big mess 🙂 I feel it immediately when the lyrica wears off. I dont’ take any during the day/morning and only 100mg a night (which is apparently a very small dose), but it does the trick!
Good luck with this all!!!!January 4, 2012 at 9:50 pmGH-CIDP – great links! thanks so much!
January 4, 2012 at 3:12 pmPauli- I don’t know exactly – I’ll let ya know tomorrow evening what they do to me! I think a tilt table may be involved – to see if you have orthostatic hypotension/tachycardia etc. . I think that digestion is involved in autonomic nervous system, but I don’t know if that means that people tend to be constipated or have loose bowels..My digestive tract has been messed up since this all started too – along with heart, vision, basically everything!
January 3, 2012 at 9:23 pmI don’t know much about the whole catheter or PE thing, but just wanted to wish you luck with it all! Netflix on your laptop may help pass the time too with some shows and movies! Good luck! I’ll be thinking about you, hope it works wonderfully!
January 3, 2012 at 12:29 pmgh- cidp- thank you! Wow.. that must have been scarey not responding to IVIG when you had such fast progression! Glad to hear you are feeling better! It really amazes me how things can affect our bodies like this, and that it can be so difficult to find a diagnosis too! I could never be patient enough to be a neurologist, or for that matter a neurological patient either! 🙂 It makes me feel better that I”m not alone with this generalized muscle fatigue in addition to the focal stuff.. The neurologists in the hospital mentioned PE for me next after the bad reaction with IVIG- though personally I’m fine with trying IVIG some more first.. I’ll go through anything to feel and get better, even if the headache and sideeffects arent’ fun!
Lori- thanks!! Yea, I would love to have answers quicker! This whole get a test wait…. and then it’s negative, and get more testing and wait… thing is awful! Though they have been doing a lot more since a few weeks ago when I got admitted.. I go to UT southwestern/Zale lipshy here to their neuromuscular clinic.. Apparently there is a CIDP expert down in houston (With baylor or methodist down there) that is supposed to be amazing.. I will give them some more time here to try to figure this out, since it’s supposed to be a great neuromuscular center.. and then consider going down to Houston or mayo.. I bet that was hard doing that on your own, especially with a spinal headache!!! Goodness I feel for you! Good luck with the PE!!January 3, 2012 at 12:21 pmI currently don’t have a diagnosis (good ol diagnostic limbo), but that has been the case with me since the day this all started- The more I walk or am up – my feet and upward get numb, when I type or do anything with my hands- my fingertips get more numb and tingly.. More I talk/laugh my face and neck even get numb! So strange.. as far as if it’s harmful- i wouldn’t think so, but I don’t know.. I take lyrica at night, which takes those paresthesias away for the most part.
January 2, 2012 at 10:30 pmThanks Lori!!! I am starting to think that Mayo may be in our future since we don’t seem to be getting many answers.. It’s so hard to just sit and wait and see what happens, since I need to be working and know what our “new” way of life will need to entail. I have autonomic testing on thursday and a follow up as well, hopefully they will have some answers, or at least a treatment plan in place.. Did you have abnormal autonomic testing?? My heart rate has been above 100 since this whole mess started.. lightheaded EVERY time I stand up and GI issues too..
