February 8, 2014 at 3:36 am
well, sorry that yall have similar symptoms, but I’m glad i’m not totally crazy! 🙂 Zbrd- Yes, lyrica has saved me… the first three or so months of this mess I didn’t sleep hardly at all.. I was sooo exhausted and would fall right to sleep, but then wake up in misery with the creepy crawly uncomfortable crawl out of my skin sensations.. I finally had to take something to help with it and they gave me lyrica.. every single time I try to cut back then I don’t sleep at all, and I am miserable with shocks, zings, crawling out of my skin sensation.. it has saved my sanity for sure!
As far as shortening the duration of the treatments, I know I should go back to every 2 weeks, but it is very hard to do that.. I am at every 3 right now.. and I definitely feel it wear off and kind of slide into that 3rd week…I am still working and raising 2 young kids, so every 2 weeks made it where I just didn’t get any time to just live… I do like the idea of 2 days in a row though.. I could do that a little easier maybe.. It’s all such a juggling act, and I defintely don’t want to do any permanent damage by going too long in between treatments.February 7, 2014 at 3:10 am
My WBC count has been low all along as well.. I think the lowest in the upper 2’s, but usually it’s in the upper 3’s or lower 4’s.. My dr said this is common in people with autoimmune issues, especially females.. We don’t do anything to treat it at this pointFebruary 2, 2014 at 9:37 pm
Hi! Yes, it is extremly terrifying having something that no one seems to be able to figure out.. as you wait for all of these tests, and then are declining in the meantime.. I felt that they just didn’t get it.. I worsened and worsened until I crashed.. my first EMG was probably about 3-4 weeks after I noticed the weakness.. the first time I felt focal weakness was in my right knee, and that’s where the demylenation showed..however I Had foot tingles and numbness before that.. that moved up to the thighs.. and then the hands.. and all the way up to the face.. I didn’t even realize I was numb or tingly, as I had a new born.. I just was in such a fog.. I was 6 weeks post partum when I had a surgical procedure go very wrong.. ended up with internal bleeding etc.. anyhow.. I got bad GI issues after that for about 6 weeks and then the neuro symptoms started..
I felt awful, weak, GI issues, and then autonomic issues (resting HR went from 60’s to 140’s), I started walking funny.. and then maybe a week or two after my legs were weak, I woke up and went to grab my phone and couldn’t.. I went to switch on the light and couldn’t.. I had a floppy like paralysis.. The tips of my fingers (all fingers both hands) where like jello, no matter what I did.. microwave buttons, holding spoons, pens, you name it – i coudln’t do it.. I even went to cry and break down in tears, but at that point my face woudln’t even move to make the “cry face” which was even more upsetting… this worsened and lasted a few months before It affected my breathing so much that my pulmonary function tests plumented and I ended up in the hospital
Everyone kept saying I sounded like CIDP.. but the test was mildly abnormal, not enough to fit a for sure diagnosis..I had about 4 other EMG/NCV in those next few months – all totally normal.. I had an epidermal nerve biopsy showing significant abnormality consistent with non length dependent neuropathy.. my ANA was pretty high, and I believe most of my other test ok (including one LP).. During the hospital they repeated my LP, and the protein was elevated.. however i also had meningitis from the IVIG.. so no one knew how to interpret those results.. ANYHOW.. after tons of testing (autonomic testing was positive).. they said they all think I Have inflammatory neuropathy, likely a CIDP variant.. After the 1st round of IVIG I thought I was better, but was also so doubtful, I thought maybe it was just placebo affect.. after the 2nd round I woke up on the 4th day and grabbed my phone, turned on the light, smiled , sucked thru a straw… and mostly picked up my kids!! I felt almost completely normal again.. truly a miracle.. ( sorry I ramble)!!February 2, 2014 at 9:26 pm
stevemckean – wow, how long did you have the ALS diagnosis? The first dr I saw about all this mess told me he thought I had ALS (i was 30 years old and about 2 months post partum).. Once they did the EMG three days later (not a fun 3 days).. they said “oh, I guess, not, you have some mild demylenation”.. anyhow.. Why did it take 7 years for the CIDP diagnosis – were your LP’s and NCV’s normal? was your needle EMG ever abnormal? SO glad your doing better!!!! I know I am almost 3 years into this and am SO thankful everday for being able to walk, talk and even work still.. I was on a fast fast decline.. thought I’d be dead in a matter of months at the most at the rate I was going.. so scary .. My neuro mentioned benign essential tremor, but my response, was that it has GOT to be related to the CIDP, as its just not likely I would happen to have a tremor at 33 and then this separate neuro issue, when no one in my family has a tremor..
gslm- I have the vibrating all over as well.. I sware I have my cell phone on vibrate a lot.. I will have to check all my pockets.. it’s really odd!January 31, 2014 at 6:51 am
Great news!!! Prayers headed yalls way!January 31, 2014 at 6:40 am
I can’t remember what the neuros told me when I was initially getting tested, but I want to say they told me that the damage done can lag a little before it shows up on EMG.. DO you have sensory symptoms as well, or just muscle weakness? have they tested you for things like myasthenia/lambert eaton etc? what parts of your body are affected? I had the GI issues first for a few months and then the neuro symptoms started.. it was about 6 months from time of “hey something is majorly wrong here”, until I got IVIG… I went from just having tingles/paresthesias waking me up at night in my feet, then hands, then shoulders up to tip of tongue to not being able to breathe or swallow, whistle smile etc.. My breathing is what landed me in the hospital to get IVIG.. My initial EMG/NCCV had some mild demylenation around one knee, which was my first symptomatic area (maybe about 3-4 weeks after i felt that weakness- floppy knee).. otherwise my tests are generally more negative (aside from ANA, epidermal nerve biopsy, autonomic testing etc)..
GOod luck! I hope you find answers and treatment soon! 🙂January 31, 2014 at 6:30 am
shivering is quite miserable to my muscles for me… it exhausts them, and is just so uncomfortable.. sometimes the numbness is worse and seems to last hours after coming in from the outside.. however heat can make my symptoms worse too haha.. I prefer spring and fall!January 31, 2014 at 5:09 am
Sorry all of yall have to struggle with this in addition to everything else as well!!! I ended up having a “re”loading infusion of IVIG and it made my tremor almost go away!! that was a few months ago and i feel like it is slowly coming back again.. I should probably be getting infusions every 2 weeks instead of every 3.. but my veins were so sore all the time – my body can get so irritated with IVIG.. the veins will hurt all the way up to my neck and even in my legs (anyone else have this)?
Ebenfelte- thats great to hear a success story!!! I like the sound of it being a sign of improvement!! I bet only getting an infusion every 9 weeks was so nice!!! I can’t even imagine seeing muscle come back! I didn’t have any wasting initially, as it hit me pretty fast – i crashed within a 6 month period.. then even though I improved greatly the wasting became a little more apparent.. (from the initial damage they presume).. I crave being able to run and work out again!!! At only 33 years old, I feel like i’m waaay older!November 10, 2013 at 5:24 am
well, “re” loading dose done!!!! I’m doing better than I would have thought – but i’m sure it has something to do with the fact that I have drank more water this past four days than I usually do in a three week period! I’m sure hoping in a few days I notice a dramatic improvement like I did 2 years ago!!!!October 31, 2013 at 2:26 am
in what way was the emg abnormal? The needle emg- what did it show? was the Ncv normal? People with ALS don’t have elevated protein in their csf but with neuropathies they do of course. , plus if you don’t respond to IVIG alone there are other options – immunosuppresants, Plasma exchange/pheresis .. Do you have numnbess/tingling etc? My tests didnt’ fit with CIDP perfectly either, but apparently my symptoms, post viral and post partum onset etc, they did IVIG and the first treatment after the loading dose- 4 days later i was almost back to my old normal… now it’s on and off, but I’m hoping you have great success!
Remember drink lots and lots of water before and after your infusions and tell them to watch the rate.. Go slow – if you have a history of migraines/headaches or are a female then watch the rate even closer those first few infusion.. Good luck, hope you get the IVIG set up soon- what a pain! Keep us updated!October 30, 2013 at 3:47 am
Thank yall so much – so I just had IVIG 5 days ago (I ususually do every 3 weeks), and I will get a loading dose next week – so less than 2 weeks apart and I’ll get 100grams (my usual dose is 50grams – I weigh 130).. I sure hope it works… I feel like I have been on a bit of a decline and I worry if it doesn’t work what that means.. especially without being a firm diagnosis. ugh!
Bill – 19 years – WOW – how are your veins?? Do you have a port? My veins hurt for a few days afterwards – like a chemical vasculitis/irritation.. it will hurt all the way up my arm and neck and my leg on the side I get infused.. it’s uncomfortable. you ever had that?
Lori – how are you?? I’ve been away from here for a while – you still doing rituxan?October 13, 2013 at 9:09 am
anyone have any thoughts on this? My dr now is saying I can do 100 grams in 2 days (my maintenance dose is 50g).. I plan on doing this in a couple of weeks.. curious if this is normal?October 9, 2013 at 10:39 am
Hope yall are doing well!!! I itch like crazy!!! I used to get little blisters on my palms and an eczema like rash on my legs.. now its over my areas of weakness more it seems- on my shoulders mostly.. it’s miserable, i want to claw my skin off sometimes!October 4, 2013 at 4:46 pm
harry- I am the same way!! If i get mad, or really excited, or any type of adrenaline, I feel like my whole body tremors.. and I actually get weaker until the adrenaline (happy or mad/sad) goes down.. its’s quite annoyingOctober 4, 2013 at 8:01 am
thank you GH, sorry you have this issue too!! It isnt’ too bad, unless i’m trying to do something with fine motor skills and then it’s frustrating.. especially if someone else see’s it, as I dont’ want to have to explain!