December 11, 2011 at 10:12 pm
Shellbones- thank you so much!! Wow, sounds like it has been quite the journey for you! I will ask them about the nerve root stimulation for sure, if we can get some answers, I’d be SOO excited!! I also like that you say you have had normal reflexes too! I defintely have pretty substaintial proxmial weakness- my hips and shoulders are very weak, but its both of my hands that have actual motor loss that is permanant- the tips of all of my fingers are floppy, and the base of my thumbs are weak.. I don’t drop things and can still grip ok, but typing, I type with floppy fingers, which is odd, and my find motor skills have gone out the window!
I also have slurred speech at the end of the day, along tip of tongue numbness and pretty extreme all over muscle weakness – including my face , I can only smile or laugh a few times before I can’t do it for a while.. (my myasthenia panel came back normal, but I think I’m going to request a Musk MG panel too).
Did you have any muscle atrophy?
I’m glad that IVIG is working so well for you! I have always been a runner, skier and surfer, and with all of this it’s looking likely that won’t happen again, but after being told that ALS was a possibility, I can live with that for sure!!!
I think a trip to MAYO may be in our future.. Do you know if the initial IVIG loading dose is usually done in the hospital, or do they start it outpatient? Thanks again, I REALLY REALLY appreciate it and you really do give me some much needed hope!December 10, 2011 at 10:06 pm
Wow Shellbones, THank you!!!! That REALLY gives me hope!!! How were your reflexes?? Mine are “normal” I have always had brisk reflexes though, and now are just normal, though several neuros have said they are almost absent or only 1/4, but then another neuro will come and and be able to get more of a response, so who knows!
How long did they do IVIG on you initally before you had the actual CIDP diagnosis? Sounds like they are going to do a IVIG loading dose trial for a bit, but they aren’t sure how it will be covered by insurance without a diagnosis (it’s now polyneuropathy with possible autonomic involvement), did you have insurance that covered your trial of IVIG?
That’s really interesting about Mayo performing those tests, I will have to ask them about the nerve root stimulation, they just looked so confused by it all, and kept saying I just seem like GBS/CIDP..
I have been so confused to how I can have visable atrophy and weakness but a normal emg!?! Were they confused about that with you as well?
Did they ever give you a specific name to your varient of CIDP? I hear there are at least 18 types that they know of.. seems like they should name yours a new type if it hasn’t been documented before! 🙂
Thank you so very much for replying, I really really appreciate it, and your story really gives me hope!December 10, 2011 at 12:18 am
Lori- Thanks for your reply!! I wonder what the difference is between the sural nerve type biopsies and the punch skin biopsies like the one I will be having. They said It will show nerve damage in neuropathies.. I wonder if the skin biopsy can show neuropathies like CIPD? I think they are trying to get a diagnosis so that we can start an IVIG trial I sure hope it helps me!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!!December 7, 2011 at 10:52 pm
Bilt- wow… thanks for replying.. Sounds like you have been through a lot!! Where were you diagnosed with the lewis sumner varient? From what I researched (dr google and all) it looks like it can have normal protein in the csf and “patchy” emg findings.. this whole process originally hit my right leg, then a week or so later both hands at the same time (for some reason my left leg isn’t really affected) my right hand is a little worse than my left (i’m right handed and my atrophy is defintely more obvious on my right hand)
Interesting about the double vision- I have double vision as well, but not constant, only when i’m tired or when I look a certain direction.. seems to only be in my right eye.. Did you have any abnormalities on your MRI’s of your brain or neck? I have mildly slurred speech when im tired as well.. They think something is also affecting my autonomic system (fast heart rate at rest, near fainting when I stand up, GI issues).
That’s also interesting and scarey about the steriods!! They briefly talked about doing some steroids (oral ones) right now while we wait on a few things, but we came to the conclusion that if its something that needs steriods it probably needs high dose IV steroids, so we’ll just hold off for now and possibly do an IVIG trial in a coupld of weeks – ever heard of someone doing IVIG without a firm diagnosis of anything? They worry about insurance coverage- and so do I since it’s not cheap!
Thanks again, hope you get to get into northwestern soon!December 7, 2011 at 10:38 pm
Dick S- WOW 5 years!!! I can’t imagine!! What condition were you in after 5 years?? I had another emg today and it was normal, the dr’s at the ALS/Neuromuscular university clinic looked stumped.. they put the needles right into my muscles that are barely functioning and have atrophy and they looked normal- so strange!
They ordered a skin/nerve biopsy – awaiting to hear just when it will be.. Do you exactly what they look for on those??
THey are talking about doing an IVIG trial, but not sure how insurance will cover that without a diagnosis of something!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 11:32 am
Thank yall so very much! I appreciate it!
Kelly- that is good to know, in case that’s what it comes down to- I’m in Texas, so Michigan is a ways off, but I’ll gladly go anywhere if it means I can get help! Hopefully we’ll get an answer, and a good one in the next few weeks!
Laurel- thank you! I realized after I found a few articles on Lewis-sumner that it was MADSAM, and that’s what your husband has! I was especially interested in the fact that it has a higher incidence of cranial nerve involvement, and I was reading up to date, and it said that many MADSAM pt’s have normal csf protein and the diminished reflexes aren’t as common or can be “patchy”, only my patellar reflexes are normal- others are considered 1/4, so all those things give me hope.. I think the next emg will be where our answers lie.. I’m NERVOUS for that! Looks like the dr i’m seeing has published a few articles about multifocal polyneuropathies that dont’ have elevated protein in csf, nor emg changes/conduction blocks etc.. so that makes me feel like I will hopefully be in good hands!
I’ll let yall know how it goes! thanks again so much for all of yalls help, Yall have been so incredibly helpful and thoughtful, and I can’t tell you how much I appreciate it while going through all of this!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!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!December 2, 2011 at 10:50 pm
Thank yall all so much for replying, I really appreciate you taking the time to respond! Well, I guess i’ll get a 3rd emg and see what those results are- no one can decide what the heck is going on.. Hopefully our 3rd EMG and the trip to the university med center next week will give us some good news… THanks again, I really appreciate yall!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!November 30, 2011 at 9:39 pm
wow, well I wish you luck!!! I hope they can find something that insurance will not only cover, but that will also help you! Did your symptoms come on suddenly and then not progress after that point? It’s been about 4 months for me as well, though My symptoms continue to worsen and worsen, now I have visable atrophy in one hand and minimal in one leg , ugh no fun. I hope you see improvement soon, thanks for taking the time to reply!November 30, 2011 at 9:34 pm
I completely understand! I went almost three months of waking up every 15 minutes or so EVERY night before I gave in to a prescription medicine, I needed sleep badly! Good luck! Laurel- interesting about Ivory soap!!!November 30, 2011 at 3:55 pm
i’m not diagnosed at this point- but CIDP is a possiblity (Lumbar puncture in the morning). I have a hard time sleeping – well getting to sleep is no problem, but the night time sensation of my limbs falling asleep wakes me up. I tried benadryl, but I also have fasiculations, that made those worse, it helped me sleep at first though. I am now taking lyrica and am very happy with it, I can tell the second it wears off in the day (it makes me too sleepy to take it in the morning so I just take it at night), the need to crawl out of my own skin sensation comes back full force, so come nighttime i’m so excited to take it and have a break from that sensation. Good luck! Hope that helps!