Nightime Tingling/discomfort

    • November 9, 2011 at 3:44 am

      Sorry for posting so many questions!! I just have so many! I was wondering who all with GBS or CIPD have nighttime discomfort/tingling that interferes with sleep?? that was one of my first symptoms- the waking up at night with “dead leg”, then “Dead arms” all night long.. I’m lyrica now which is helping a lot.. when it wears off in the day (i only take it at night since i feel too sleepy in the day) the creepy crawly tinglies come back in full force and is so uncomfortable, especially if i have something tight around my arms or someone rub up against me.. Anyhow, just curious who else can relate to this?? Thanks in advance!

    • Anonymous
      November 9, 2011 at 8:47 am

      bny,
      GBS four years and can relate to all you describe. Spasms in the legs almost every evening that prevent me from getting to sleep at times.
      Lyrica was three times daily, changed it to one in evening due to sleeping during the day.
      Can’t stand for someone to rub shoulders or back. Very careful of materials used with clothing or blankets as can’t stand it aganst my body.
      Others with GBS have talked of these same issues.
      Take care
      Shirley

    • Anonymous
      November 9, 2011 at 8:52 pm

      That was my daughter’s first symptom. She started waking up at night & screaming saying her arms were hurting. We thought she was sleeping on them & they were falling asleep & cramping from that…she was 4 at the time.

      Kelly

    • Anonymous
      November 9, 2011 at 9:11 pm

      I have the same problem.

      I take Gabapentin during the day and at night I take Nortyripline.

      I have adivan for really bad nights.

      I also find that a warm rice bag helps.

    • November 10, 2011 at 10:24 pm

      Thank yall for your replies! It’s nice to know I’m not alone with that!! Those sensations can be so uncomfortable, and especially at night, waking up all the time with them is just no fun!!!

    • Anonymous
      November 11, 2011 at 1:02 pm

      I have a question for you. You said you were taking lyrica. Have you been treated with IVIg yet? Also have you tried a lower dose of lyrica during the day?

      I had/have the same problem you describe so welcome to the club. If lyrica is making you sleep, Gabapentin is an older [and cheaper] drug that my work. Look it up on the web.Gabapentin is supposed to have more side effects but some people respond better to Gabapentin then to Lyrica and visa versa. So…

    • Anonymous
      November 11, 2011 at 2:31 pm

      I can relate to that, and for me it’s getting worse in my arms and shoulders at night. I have almost no muscle strength and very little biceps muscles now, and moving my arms at all is excruciatingly painful, and much worse at night, when the paralysis takes over. In order to turn over, I have to do physio exercises in my shoulders and arms first to minimize the pain. Can’t move my arms or pull up the blanket or straighten the pillow without physio exercise first. Some nights I’m tossing and turning till dawn because the pain is relentless and I can’t fall asleep. And the more activity I do in the daytime, the worse it is, especially my hands, which burn and tingle furiously all night long till they go numb enough for me to drop off to sleep.

      One thing that helped me on some nights was to discipline myself to fall asleep while in pain, and not turn over. (Because I know my tossing and turning every few minutes is actually my body’s way of trying to escape from the pain, and there’s no escape.) That self-discipline actually worked, and I got a few hours sleep, but I’m not mentally strong enough to do this every time. The past 4 yrs. have taught me a lot about how to endure constant pain, but it does really get to me sometimes, and I know I’m weakening whenever I feel pain and my teeth chatter with reaction. Believe it or not, we can actually learn how to endure pain better, as we adjust to it. Years ago, I used to fret about my back pain, and my osteoarthritis and my various old joint injuries, but since GBS hit me, I don’t think too much about that anymore, because the new pain by far outweighs all of the old pain. And sometimes I can even handle the GBS pain better.

      On a personal note:
      Saw the latest doc last week, and told him about all this, but he did nothing, just a little smile, like he was discounting what I was saying. Showed him my swollen, numb hands, and he couldn’t bend the fingers, but did nothing about that either. Showed him my swollen ankles and feet, but he refused to ‘see it’.
      It has been a very bad 2 weeks for me since that day. I’ve been so angry. Thank God for this forum to help me come up again from all this hell on earth at the doctor’s office. If it wasn’t for this forum, I don’t know how I’d cope sometimes. I’m feeling better as time, distance, and other activities gradually replace the memory of that visit.

    • Anonymous
      November 11, 2011 at 8:29 pm

      Sounds like we all went to different schools together.

      I can relate to the night time scenario – the same only different. DU mentioned self-discipline works to get through it – but not every time.
      Self D requires energy and when a person is running low its easy to run out. I’ve spent a lot of nights staring in the dark, just hanging in there. I found it best to not get up and I just lay there – sometimes there are no good choices.

      When I feel myself tense up or get angry like DU described ~ I get over my anger pretty quick. Anger gives the other person power over me and I don’t want that. DU, I’ll bet a nickel your doctor didn’t have another thought about you when the door closed and still doesn’t. I’m not saying I get happy – its natural to get angry – we should get angry – but that’s a rock I don’t want to carry to long. I have other feelings to replace anger (disgusted, disappointed, amazed at incompetence, and maybe a few adjectives for good measure).

      Me: “So what can be done about this foot/arm/leg doc?”
      Doc: No answer, a slight smile…
      Me: “Well, doc, what can be done?”
      I then shut up and just look at him… silence – so be it. If he tries to change the subject I don’t go there. I lobbed the ball in his side of the court and he hasn’t hit it back.
      Doc: “Well, we’ll just have to wait and see.”
      Me: “That’s not an answer to my question.”
      I do not repeat question, he already knows what I asked. I sometimes get interesting results and even respect for standing my ground.

      I digress, but this is a forum for sharing thoughts and experiences – so, I add the following:

      Recently, I was sitting in my chair, as usual, and watched as someone just got up from their chair – without even thinking about it!!! – and left the room. I had a sudden and unexpected feeling of jealousy of all things! It hit me square on and it was a powerful and unusual sensation for me. I had to dig deep and work hard to overcome that surprise.
      Best to all

    • November 11, 2011 at 9:33 pm

      Jim- yea, i was taking 150mg of lyrica at night (thats what i had increased to) and only ever tried taking one pill (50mg) in the morning, or else I just can’t function as to being too sleepy.. I tink the whole being too sleepy thing was very beneficial though at night.. I hadn’t actually slept through the night in MONTHS (i was pregnant, then had a newborn who is now 8 months, and this fun started during all of that – so even though not long compared to most of yall, i was still craving some decent sleep)! I had about a week where i was sleeping finally- not waking up in misery with the feeling of my nerves being graded, and the whole asleep feeling.. well at my appointment yesterday the neuro thinks that now it is isaacs syndrome or BFS.. humm i have a lot of sensory issues too- especially to temperature, so he said to stop the lyrica and take tegretol, that it should improve my muscle strength and decrease the fasiculations (the fasics themselves aren’t very bothersome to me).. so last night was AWFUL! I miss my lyrica! I was back to just not being able to stay asleep- I go to sleep no problem, but minutes later wake in misery and just feel beat up come morning time. it makes for a LOONG night! and so far feeling NO better with the tegretol, though I understand it may take time.. but from what I understand won’t help nerve pain, which is what this feels like nerve pain and parethesias.. soo i’ll give it a try for a week and if i feel like this everyday and night i’m going back to the lyrica and sleep!
      Yea.. This past few months i have had a few dr’s just look at me with blank stares.. and when I ask what they think this all is they really dont’ know, which I understand, but to sit around and wait, and not at least try at least symptomatic relief seems a little unheartening.
      BigTree- I hear ya! The simple things that everyone takes for granted that have now become so difficult (especially for yall that have really had a tough time) have kind of made me back away from a few friends, which isn’t the right thing to do I know.. but with all of this on my mind and body like this (and the fear of ALS that the one dr had put in my head- not that I needed any additional help there) has made it hard to hear my friends talk about how stressful it was that they had to shop all day for their upcoming vacation, and that there maids were at their house at an unconvient time! ha.. sooo even though I know there is no way they can understand what i’m going through, I find it best to proably just not be faced with that conversation for a while 🙂 Thank goodness for the internet where I can find people who can relate a bit !!! Thanks again for all of yalls help!

    • Anonymous
      November 12, 2011 at 2:10 am

      BNY806 ~ I also had the ALS Bomb dropped into my head by my Dr. He did it in a casual off-hand way and when he saw my reaction said I “looked pensive.” It was a long 10 weeks before I got to the specialist-specialist and was dx’d w/CIDP.
      *********************
      Doctors are people too, with all the foibles of regular folk. If all doctors were nice and caring – what a wonderful world – but there are some great doctors w/lousy personalities. Maybe they hear and see so much of the bad side of life they just can’t carry it all. I know of a highly-skilled back surgeon who hired a nurse with a sparkling personality to accompany him when he was with patients. Good idea. He helped a lot of people and did operations that others would not do.
      So on top of a difficult disease to get a dx and the ‘right treatment we also have to find the right doctor. We also get to do this when we are sick. Oh yeah, then there is insurance company…no easy task. Could wear a person out.

    • Anonymous
      November 12, 2011 at 4:48 pm

      Thanks very much, BigTree, for your excellent counsel.
      Thank God for this forum…it’s my only lifeline.

      Couldn’t sleep last night for the pain, so got up at 5AM, and worked on my handcrafted rugs for Christmas gifts. Cutting up unusable clothing for the fabric strips, and wore a glove on my scissors-hand, so no blisters. Worked for 3 1/2 hrs. measuring and cutting 5 prs. of pants into rug strips till absolutely overwhelmed by exhaustion. Then slept blissfully and blessedly for 3 1/2 hrs!
      Sometimes I get up at night if I’m in pain, and do things that need doing, then I can drop off to sleep afterwards. Housework, projects, accounts; it distracts me from the pain. It’s not the routine I’d choose, but at least something is getting done, and usually I can drop off to sleep afterwards.

      (And it still really disturbs me whenever I see somebody riding a bike; that used to be me; and nobody in this town gives a darn about what has happened to me. Other things: tying shoelaces, picking something up from the floor, handling coins at the store, opening a door while pushing my medical walker (clerk just walks off), opening a water bottle, peeling an apple, using a can-opener or knife…)

    • Anonymous
      November 13, 2011 at 3:50 pm

      Very interesting. I was diagnosed with CIDP just about two years ago. I have more-or-less continuous tingling, loss of feeling, and pain in my feet and lower legs. It’s a nuisance, but I have pretty much learned to ignore it.

      But lately, I have had a sensation of my hands and arms “falling asleep” when I am in bed at night. It’s an odd mixture of numbness and pain (seems contradictory, I know). It is really troublesome, and frequently wakes me up. My other symptoms are pretty well controlled by regular IVIG, and I didn’t think this was related to the CIDP. In fact, I had just about convinced myself that I have carpal tunnel. But, hearing that others have the same problem, I think I will bring it up to my neurologist.

    • November 29, 2011 at 11:26 pm

      thank yall so much for the replies!! I hope all of yall are sleeping ok at night!! Bigtree- yea the ALS bomb is quite a lifechanging experience, it’s amazing how what you know as your life can be turned upside down by the mention of three letters!! Docs are just normal people, I defintely think they get desensitized to it all, someone may not be dragging their leg, and still have weakness that is a disability to them, if they can’t do what’s important in their lives anymore, and neurology especially is so subjective, which I guess is why my possible diagnosis keeps changing!! Now they say it’s not BFS, as I have clinical weakness (which I have been telling them I had weakness, but no one could appreciate it until last appointment with a new neuromuscular specialist).
      The neuromuscular specialist told me to not take the tegretol, which honestly I had only tried for three days and after three days of wanting to scream and crawl out of my own skin, i stopped anywyas, and got back onto my lyrica- what a great night’s sleep that was after three nights of NO sleep! Now CIDP is back in as a possibility along with much scarier options .I have my LP on thursday morning – praying something shows up on that, that will be treatable.
      Does anyone notice that the falling asleep of their limbs sensation is worse when lying on their backs? I can just lay down on my back and within minutes my arms and right leg feel like they are asleep, it still happens on my sides, not not nearly as bad.. interesting

    • Anonymous
      December 2, 2011 at 9:39 pm

      bny:
      wondering what was the follow up – ? I think the hardest part of all is not knowing. It is scary – scarier than getting a possible ALS diagnosis; scarier than anything we deal with. If we have nothing to fight against, we have nothing to rally for and beat. (When we learned of CIDP, didn’t we get on the computer to find out more about it? And didn’t this forum give us so much comfort – and knowledge – to fight with? )

      Please post so we can celebrate your good news – or join you in a renewed fight against the deep dark unknown. The great news on this forum is that there are so many cheerleaders who are there to help us along the way, even when we don’t know what we are fighting for/against.

    • December 2, 2011 at 9:51 pm

      Thank you so much- you are right PattyO, the unkown has been pretty awful… since I think it’s human nature to fear the worst- especially with the symptoms I’m having right now.. Who knew I’d be wishing I had MS or something “treatable” like that..Also, I am so thankful for all of you on here, yall have all been soo wonderful and so helpful! Even though I’m in diagnostic limbo, being able to “talk” to yall has really helped ease the fears a bit!

      So, I had my LP yesterday, praying that there was elevated protein or something that we could treat… got the call today and everything is totally normal : ( So, that rules out a lot of things unfortunately, which means the possibilities are getting more and more narrow.. I felt so sick to my stomach when we got the news.. I have had two emgs, and I guess we need a tiebreaker, since one was stone cold normal, and one showed demyelination, but at a typical place (though that was where my first syptom was – peroneal nerve). It is pretty frustrating to have two emg’s and them give us no answers, with the type of weakness and wasting i’m having there should be something showing up i would think
      The good news is that right after I got my LP, I got a phone call- the university UT southwestern neuromuscular/als clinic which I had an appointment with on Janurary 2nd (they were booking out in April, but my dr got me in earlier), they reviewed my chart and got me in now even earlier- next wednesday! I’m so incredibly nervous, but hopefully we can get answers..
      Did anyone try IVIG without a firm diagnosis? My current neuromuscular doc said whatever I have is likely going to be autoimmune (with all the physical stress that happened preceeding my onset) and IVIG will likely be what I need.. Can they just try that without knowing what they are treating?
      Thanks again so much for yalls time! I really really appreciate it!

    • December 2, 2011 at 11:40 pm

      yes —i was started on the ivig as soon as the emg/ncv showed abnormalties without the definite cidp diagnosis.

    • Anonymous
      December 3, 2011 at 7:20 am

      Hello..bny806 Are you being seen at UT Southwestern Medical Center in Dallas??? I was diagnosed there in 1996. The worst thing was not knowing so I totally understand, so glad you could get in with an earlier appointment. Please feel free to ask me any questions. It has been a while since I have been on this forum and it is wonderful to be able to communicate with others!

    • Anonymous
      December 3, 2011 at 9:21 am

      Yes, your dr can order IVIG without a diagnosis. It’s called empirical treatment.

      I forget, have any of the dr’s ordered an MRI with and without contrast of your brain & spine?

      If not, that needs to be the next step.

      Kelly

    • December 3, 2011 at 9:54 pm

      Thank yall all so very much for the replies!!! I can’t tell yall how much I appreciate it!
      Lori- thank you, I am sure they are going to want to do a third emg- one by themselves at the UTSW appointment, My current doc says whatever I have is likely going to respond to IVIG given the sequence of events, its likely something autoimmune causing it all , unless it’s something worse.

      Lynette- Yes, I am going to UT southwestern in Dallas, thanks for replying! How was your experience there?? Do you remember what dr you saw? I am seeing a female dr- first name Sharon. I’m so nervous about it! Did they do their initial appointment with you and then you have to schedule tests and wait a while before more testing was done, or was it organized in a way that things happen quickly? Did they do everything outpatient for you? I am continuing to progress fastly, so the whole waiting for test results, getting them back, and then scheduling an appointment waiting, and so on, is getting more and more frustrating. I’d love to hear about your experience there!

      Kelly- I might ask, depending on the direction the appointment is going naturally, if they could consider doing emperic IVIG.. with the string of events that preceeded this all, most of the dr’s that know about my case seem to think it would likely help, at least not hurt! I wonder how they get insurance to cover it when they dont’ have a firm diagnosis to go on. Yup, they did an MRI head and neck with contrast the very first week I had syptoms – my obgyn ordered it thinking I probably had MS… when it came back negative then everyone was more perplexed, and I was even a little more scared at that news.
      Thank yall so much!! It really does help to have yall to “talk” to and ask questions! I appreciate it!

    • Anonymous
      December 3, 2011 at 10:59 pm

      [QUOTE=D.U.]I can relate to that, and for me it’s getting worse in my arms and shoulders at night. I have almost no muscle strength and very little biceps muscles now, and moving my arms at all is excruciatingly painful, and much worse at night, when the paralysis takes over. In order to turn over, I have to do physio exercises in my shoulders and arms first to minimize the pain. Can’t move my arms or pull up the blanket or straighten the pillow without physio exercise first. Some nights I’m tossing and turning till dawn because the pain is relentless and I can’t fall asleep. And the more activity I do in the daytime, the worse it is, especially my hands, which burn and tingle furiously all night long till they go numb enough for me to drop off to sleep.

      One thing that helped me on some nights was to discipline myself to fall asleep while in pain, and not turn over. (Because I know my tossing and turning every few minutes is actually my body’s way of trying to escape from the pain, and there’s no escape.) That self-discipline actually worked, and I got a few hours sleep, but I’m not mentally strong enough to do this every time. The past 4 yrs. have taught me a lot about how to endure constant pain, but it does really get to me sometimes, and I know I’m weakening whenever I feel pain and my teeth chatter with reaction. Believe it or not, we can actually learn how to endure pain better, as we adjust to it. Years ago, I used to fret about my back pain, and my osteoarthritis and my various old joint injuries, but since GBS hit me, I don’t think too much about that anymore, because the new pain by far outweighs all of the old pain. And sometimes I can even handle the GBS pain better.

      On a personal note:
      Saw the latest doc last week, and told him about all this, but he did nothing, just a little smile, like he was discounting what I was saying. Showed him my swollen, numb hands, and he couldn’t bend the fingers, but did nothing about that either. Showed him my swollen ankles and feet, but he refused to ‘see it’.
      It has been a very bad 2 weeks for me since that day. I’ve been so angry. Thank God for this forum to help me come up again from all this hell on earth at the doctor’s office. If it wasn’t for this forum, I don’t know how I’d cope sometimes. I’m feeling better as time, distance, and other activities gradually replace the memory of that visit.[/QUOTE]

      D. U.
      Take off the gloves and let him know that he works for you. If he is going to be condescending or dimissiveof what you tell him he can be replaced! None of us have time to waste on those kind of ‘Doctors’ !

    • Anonymous
      December 4, 2011 at 3:57 am

      UT Southwestern was awesome..I got a referral to them from my primary because no one else knew what was going on. It was all outpaitent for me but there were some days I did spend the whole day there since I lived in Ft. Worth and did not want to drive back and forth..lots of reading material!!LOL Did alot of tests in the morning.emg,nerve condution and lp and met with the drs in the afternoon and being it is a teaching school sometimes students come in during some testing but it is all good. My dr. was Richard Bahron, he is also on the CIDP board, and he had me diagnosed within 24 hrs of all my testing and patient history..unfortunately he is no longer there..I think he is in KC area..but ALL the drs. were awesome and they know there stuff!!! I bet if you mention his name that would know who he is. I moved to Colorado and metioned his name to my nuerologist and he told me “Dr.Richard Bahron is a GURU!!, you could not have had a better dr.” After I was diagnosed I entered a IVIG Trial study at SWMC and spent lots of time with the staff and testing IVIG. I didnt respond to well to IVIG but I did try it for almost 1 1/2 years. not much change. What worked for me was PE..plamsma exchange..I have been stable since 2004 but I still credit geting a diagnosis quick..took me 4 months..and I never lost mobility…some days I could barely walk but never unable to!!!GOOD LUCK!! BE EXCITED NOT NERVOUS….BUT I KNOW I WAS A BASKET CASE!!LOL

    • December 4, 2011 at 4:45 pm

      were you using just plasma x/c alone or with something else after your ivig? i just finished up with about 2 years of ivig–like you, no worsening of symptoms but no significant improvement. Im trying to decide right now whether to bother with PE or jump right to rituxin—-my dr is leaving the decision to me?? I have read several cases where ivig was not successful and PE was.

    • December 4, 2011 at 9:26 pm

      Lynette- thank you so much, that makes me feel less nervous and more excited about the appointment.. I sure hope they can find out what’s going on and help get treatment started.. I’ve lost mobility in all my finger tips and both thumbs are worsening and starting to see atrophy.. I have had days where my legs feel like there is concrete in my shoes too!!!
      I’m so glad you had a good experience there, the fact that many of the dr’s specialize in ALS makes me nervous, but I also need to realize that they are also the ones who are going to best be able to tell me that it’s not if its not. I have so much more tingling and numbness the past few days, it’s getting more and more uncomfortable, but I find comfort in those sensations!
      I’m glad PE is working well for you! I love Colorado, we have talked many times about moving up there (especially every august here in texas), but then we get a cold winter here like last year, and we rethink it haha. we are usually (if my body isn’t trying to break down on me) very into skiing, hiking, camping etc! How do you like it??

      Do any of yall get worse pains/tingling/nerve sensations when you put pressure on certain areas, I am bad about crossing my legs when I sit and with the increased tingling sensations the past few days I have a painful sensation where the pressure is below my knee when I cross them and it is going down to the foot down the front of the leg.. same thing with my hand when I was resting it on the side on my desk. like the nerves are hyperexcitable or raw or something.. sound familiar to yall at all? Thanks again so much for yalls time!!! Yall really make me feel so much better!

    • Anonymous
      December 6, 2011 at 12:27 am

      BNY806- the only other drug I used was prednisone and it worked but not something I wanted to stay on, just till we figured out what would work best. I also did not get better but did not get worse on IVIG..so after I moved to Colorado and I was ready to try something else, my neurologist suggested the PE. I only had to go thru one round and it worked..my numbness was in feet and hands also with tremors in the hands. Fingers felt horrible…but after the PE, trying to think how long it took, maybe a month or two, I got all my feeling back in my hands and most in my feet except for the bottoms which the neurologist said is very hard for the nerves to repair in the bottom of thefeet because those nerves are the longest nerves in your body…I was happy…I can live with that..when you go thru this you are just grateful for any thing to feel normal!!! I would look into PE but that is your decision..the worse part was they had to insert a port but after that it was easy.The bad thing was sitting in dialosis (my spelling sucks)and seeing others that are way worse than you on kidney treatments!!! made me feel thankful. One reason I moved away from Texas was due to the heat..killer on neuropathy..but I was lucky and had family in Colorado and nothing keeping me in Texas….my mom laughs at me cause when it is cold I can walk outside on the cement barefoot and it feels so good on my feet!!LOL…i know kinda crazy!!! GOOD LUCK!!!!

    • December 6, 2011 at 3:37 pm

      Lynette- thank you!!! haha, I know what you mean about the cold on your feet- I used to HAVE to wear houseshoes in the winter, even here in texas, in the house I couldn’t stand cold on my feet, now I cant really tell they are cold anywyas, so no need to wear houseshoes! It’s funny you say the heat worsens your neuropathy- I just realized today after getting out of a hot shower that my skin sensations are WAY worse after a hot shower!! I feel the need to crawl out of my own skin, it is such an uneasy awful sensation!!
      Anyone else more bothered with their skin sensations after getting out of a shower?? I don’t know if it’s the temperature or the water hitting me that makes it worse, but I just can’t hardly stand it!!!
      Well hopefully tomorrow’s appointment will give us some answers maybe, and let us know if/when they are goign to do a 3rd tiebreaker emg! I sure hope that they can initiate some sort of treatment for whatever the heck this is soon! I just feel bad all over, just weak in every single muscle- anyone else feel that way? I just havne’ t felt well in months since this started.. I am SOO ready to feel even a little better.. hopefully!!!

    • December 6, 2011 at 8:28 pm

      yes–the heat aggrevates my neuropathy–getting out of the hot shower is the worst, they feel more numb and heavy after that.
      Lynette—your post about the plasma xc has given me a much better feeling about it–and most importanty HOPE that maybe it will be my answer too. I was real happy to read that you only needed one round of it. Are you free of all treatments after the pe? Could you tell it was working for you right away? How was the port—you must not have had to leave it in where you only needed one round? did you have to be hospitilized or do the pe as an outpatient? sorry so many ?s–just not a lot of info on real peoples experience with the pe–and i really want to be prepared for whatever im in for. Thanx again for your post–it was the positive i needed to read today 🙂

    • Anonymous
      December 6, 2011 at 8:45 pm

      Big Tree wrote this

      Recently, I was sitting in my chair, as usual, and watched as someone just got up from their chair – without even thinking about it!!! – and left the room. I had a sudden and unexpected feeling of jealousy of all things! It hit me square on and it was a powerful and unusual sensation for me. I had to dig deep and work hard to overcome that surprise.
      Best to all

      i watch my co-workers doing there jobs and get mad at myself for not being able to do the thinks i use too before CIDP. im not giving up but this sure isnt easy

      Reed

    • December 7, 2011 at 11:02 pm

      Reed350 – I understand that!! I have 2 kiddos under the age of 2 years, and I see my friends juggling their kids no problem, and with me I just havne’t been able to do things that I just want to do and should be able to do so badly! Walking up stairs etc.. The other day it was pouring outside as I left work, so I tried to run (i hadn’t done that in a few weeks) to my car.. I coudln’t run, my legs/hips just didnt move right.. so I had to walk and got soaked! But hey it can always get worse! 🙂

      So I just got back from my UTSW appointment and not sure what I think.. I guess I was expecting them to have at least several ideas of what could be going on, if not say “ah ha we know what it is!!” instead they looked quite confused and perplexed.. They were great though – extremely nice, they spent A LOT of time with us (like 3 hours), and had them do an EMG right then and there, which was great!!! I had two dr’s examine me (one couldnt’ get much response for reflexes the other got very normal reflexes- I hate how subjective neurology is!!)
      The good news was that they said it was not ALS—- THANK THE LORD! I can breathe easier!!! But, they just didnt’ have many answers.. They dont’ think cidp due to the normal emg- 3rd emg, they tested the muscles that are showing weakness and atrophy and they were normal, which they thought was odd too! as did I! They sent some blood work off to mayo and scheduled some autonomic testing (i have had fast heart rate since this all began, lightheadeness, and GI issues). and also ordered a skin/nerve biopsy , so hopefully we’ll find answers somewhere!!