Proximal and distal weakness anyone?
February 19, 2012 at 2:48 am
My symptoms are creeping in more and more each day with this last IVIG not being as effective and possibly having a relapse.. Anyhow.. I was curious if anyone else has distal and proximal weakness too? I have been weak in the hips sinc this all started.. and a little in the ankles.. and the shoulders, well you name it and i’m weak there – face, hands etc.. the hands/dexterity were pretty bad, and I have muscle wasting there. My hands have greatly improved, but I’m back to hardly being able to lift my hands above my head due to shoulder weakness and can’t walk long distances or carry my baby far at all without my hips fatiguing and shaking and almost giving out on me
My buttock muscles just ache with exhaustion!! My face trembles with weakness too right now.. though my trunk muscles have been worse (when I was admitted into the hospital for a week, I couldnt’ even use the bathroom or hardly breath my trunk muscles were so exhausted)
Just wondering if anyone else has weakness like this?? thanks!
February 22, 2012 at 1:58 am
mine is distal in the feet, ankles, calves. which means if it progresses my thighs would be next to where my fingertips hit the thighs when standing, from there it would hit the hands and that area.—-that is if it followed the standard pattern of distal neuropathy———does anything in this cidp have a standard pattern though???
February 22, 2012 at 2:55 am
Thanks Lori! Yea, if I have learned anything, nothing in neurology follows a textbook!!! 🙂 Mine started with a “floppy” knee, then hips, theh hands, shoulders and face and tongue!! My lower extremities are almost all hip (I don’t notice the knee anymore) and my hands are pretty bothersome, but thats simply becuase I use them more I think… Anytime I try to use my shoulders they fatigue faster than my hands I think… Though after the IVIG I could hold my kids and shop/hang clothes again (i couldn’t do it last time I tried) ..It is interesting how this affects everyone so differently!
February 22, 2012 at 11:52 pm
Ive read that the healing happens the opposite of the damage. So the first thing damaged would be the last to heal. then again i have read that when you have denervation that the healing can be sporatic. so even the healing does not follow any standard textbook. so did your symptoms more or less start from the center areas of your body then spread out to your extremities?
February 23, 2012 at 3:28 am
Thanks Lori!! My first symptom I noticed was in my right leg… one night (this is after I had been battling GI symptoms and just not feeling well for a few weeks) I noticed my right knee felt “floppy”.. then a few days later my hips felt awkward.. i tried to run and realized I couldn’t.. I waddled wierdly! Then I woke up a few weeks later and both of my hands had been hit… I noticed first thing when I grabbed my phone to turn off the alarm, then toilet paper, lightswitches .. holding mascara.. they were normal the day before and then BAM they just didn’t work right.. Around that time I started being unable to sleep due to the tingling/crawling/numbness/asleep feeling in my right leg, up to my knee, then hip then hands it crept up to my elbows shoulders then face.. all within about 2 months or so? Everyone kept telling my they thought it was due to me being numb that I felt weak.. (all my neuro exams I guess I showed pretty bad numbness and proprioception loss).. my tongue and speech were hit then soon after swallowing breathing.. ugh.. haha.. it’s just crazy sometimes when I think about it! I was carrying my kids, working a full time demanding job, working out and breastfeeding .. the IUD perforated and it’s been downhill since!
It’s strange it seems that this recent relapse hit my hips especially hard.. After my 2nd IVIG I could walk normall again – no more waddling!! 🙂 I could run even, and ran normally, not that I was jogging, but just playing with my kids outside.. and now I can barely walk.. I’m worried that I’ll be in a wheelchair soon if yesterdays IVIG doesnt’ work, I’ve had a bunch of near falls the past week, and feel like i’ll dislocate both my hips they are so weak! 🙁
February 24, 2012 at 2:34 am
such a rapid onset?? Are they getting any closer to an actual diagnosis for you or are they just going to treat it as cidp and see how you respond? Are you still thinking of going out to Mayo? Isnt it awful when you go to do something and realize you cant anymore!! thats how it was for me– i went to show my son how to do a triple jump for track and realized i didnt have the strength to push off for the jump—-and to think i had the record for it when i was in school !! the same with running, i stopped when my feet were hitting the ground so hard its a wonder i still have knees and a back left. the other day i went to stand in a chair to change a light bulb and realized i no longer have enough balance to stand on a chair, i guess the extra height??i just know that when i went to stand if i didnt keep one hand on the back of the chair i couldnt balance.
But i think it is a good sign that you regained so much with the ivig–it shows that it was working at least and hopefully you can get it again before getting any relapse so you wont lose what you gained back.
AnonymousFebruary 24, 2012 at 4:17 am
When I get weak, I think it’s in my legs and hips. When I go for my daily walk, everyone walks faster than me. Then I know, there’s something wrong. I get this off and on weakness. Even walking up a hill that’s only a little steep, I feel I have only limited power in my thighs and legs. I still have trouble trying to stand up from a stooping position.
My hands are pretty strong now. Before, I had hardly any strength to squeeze a sponge–Both my hands were very numb. Before being diagnosed, I had trouble walking up the stairs. Eventually I couldn’t even walk up the stairs or down at all, like I was paralyzed. One time, when I stepped up onto the curb, but missed it and fell. I think that was the beginning of my weakness now that I look back at how it all started.
February 24, 2012 at 9:05 pm
THanks so much yall!!! Lori- after the nerve/skin punch biopsy came back abnormal up to my thigh, plus abnormal autonomic testing, and response to IVIG they are going to treat me as CIDP/inflammatory polyneuropathy, also in my most symptomatic leg my reflexes are finally diminishing … I really hate not having a firm diagnosis of this though.. my mind always goes to worse places as far as diagnostic possibilities.. if all my reflexes were diminished and my ncv/emg showed without question cidp (first one did show some demylenation) then I wouldn’t question everything as much 🙂 yes.. I see people running, and carrying their kids etc without difficulty and have a bit of jealousy i must say.. to do all those everyday things without having to think twice, would be so nice.. but hey things can always be worse, so i’m not complaining!
exosurf- glad to hear i’m not alone with the hip thing! My hands also used to be worse! I could barely hold the formula scooper or pen or mascara when this first hit me.. it was just like one day I could do everything and then the next day could barely do anything – squeezing the shampoo bottle was also difficult for me as well.
Do either of yall fall over when closing your eyes?? At the beginning when the neuros would test that with me I could still stand pretty stable.. but now i close my eyes and topple right over.. I sware I almost fall a lot right now, since this last relapse hitting my hips.. I just hope I don’t face plant while holding my kids!!
Guess the good news about the relapse is that I cn’at feel my broken toe anymore! 🙂
February 26, 2012 at 12:36 am
yes I have difficulty standing with my eyes closed. Even when Im walking i have to look ahead at where im going so i dont stumble—-makes it awkward when walking beside someone and they are carrying on a conversation, and im just really focused on getting to point a to point b without stumbling. Ahhh….remember when walking just used to be effortless and natural, not having to concentrate on every step and the fatigue it now brings on….
February 26, 2012 at 2:35 am
haha, funny you say that Lori.. I was walking last night with my husband on the sidewalk and must have knocked into him so many times, I almost knocked him off the sidewalk.. It’s just odd the way I walk now! I waddle like a duck when symptoms are really bad (hip weakness I guess).. I guess I should cancel that gym membership I signed up for after I had my son!!?! 🙂
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