Droopy Face!

    • February 28, 2012 at 3:44 am

      Sorry to ask yet ANOTHER question.. I just have sooo many!!! Does anyone else get a droopy face?? One of my first symptoms I noticed was my eyelid crease had changed- they were droopy.. at the time, my heart rate was really racing and I had palpitations, wt loss and the GI symptoms .. (they think the preceeding/causative virus was occuring).. I assumed it was hyperthyroid post partum and my eyes were protruding or something! Anyhow .. sometimes my face isn’t droopy at all, and today its especially droopy again, its the strangest thing!!! One of the cidp patients at the infusion center complained of the same thing.. she has very atypical features as do I.. just curious.. I’m only 31, it’s like botox in some areas haha, but then counteracted by the tired appearance of my eyelids!!! :0

    • February 28, 2012 at 2:40 pm

      Did any one suggest Bells Palsy? It eventually goes away.

    • February 28, 2012 at 8:58 pm

      No one has suggested that actually! It is on both sides of my face though.. but it did seem to be not there one day (my old eyelids) and then after getting out of a hot shower the next day when I went to put on my makeup they were all different! I have days where they are almost back to normal.. and days where I can smile all day and talk all day and others where my face is almost paralyzed, and numb! So strange!!! On the up side, I’ll never need botox with this going on!

    • February 29, 2012 at 4:43 am

      You had a brain MRI with contrast….right? I’m wondering if you have cranial nerve inflammation on the nerve(s) that control that – I think it’s the 3rd nerve. Do your pupils dilate in a normal way? Do you have full movement with both eyes? Do you have blurry vision?


    • February 29, 2012 at 9:01 pm

      Yup, I sure did have MRI’s with contrast – in fact I have had two just of neck and head .. The first one was read as normal (about a month after my symptoms started or so), everyone was thinking MS.. then it came back clear, which stumped everyone. the second one was done in decemeber when I was in the hospital- it showed one lesion on my brain and possibly another on my spinal cord in my neck.. however all other MS testing (LP, evoked potentials ) came back normal, so everyone said no MS.. As far as I know no one commented on nerve inflammation (though does that show up early on in the course? I have read of hypertrophy of the nerves with chronic symptoms for a while.. didn’t know if that would show up “acutely” or not).. As far as my pupils- they are abnormal.. My autonomic nervous testing came back abnormal for heart rate/blood pressure and pupil response… My vision since this started is very bad.. I never have worn glasses in the past, but I went to the eye dr a few months into this when I had double vision (thinking again it must be MS- for them to look for optic neuritis)..but they said my eyes were fine.. My vision is slightly double all the time.. and just “awkward”!

    • March 1, 2012 at 2:39 am

      You need to ask your dr if your MRI’s were done with contrast. You need the contrast to see inflammation.

      Emily had cranial nerve inflammation on her 1st brain MRI & the dr said she “lit up like a Christmas tree from the lower lumbar down”. Her 2nd brain MRI showed no inflammation – that was after 8 months of being on an intense IVIG schedule. She still had the inflammation on her spine. She hasn’t had an MRI since.

      Diplopia (blurry vision) is common when you have cranial nerve inflammation. You need to find a specialist for your eyes. Just going to any old regular opthamologist isn’t a good idea. The eye dr should dialate your eyes & look for inflammation at the back of the eye.


    • March 1, 2012 at 8:59 pm

      Thanks so much Kelly!! Yea they were done with contrast- the first one they stuck the IV in my arm and I didn’t even know it!! I was so numb, i coudln’t feel a thing..that’s the moment that it really hit home that there was in fact something really wrong!

      I had the first one done in a suburban hospital on an older machine.. the 2nd one was done at zale lipshy (the neuroscience center at UT southwestern), on a better mri machine, but not a T3 (i think that’s what its called).. I have harrington rods in my back from scolisosis when I was 16, so they think that a T3 MRI would cause too much artifact. I’ll definetly get copies of the MRI reports though, I wonder how obvious inflammation would be of the cranial nerves, or if they really have to specifically look for that? I have never had imaging on my T or L spine due to my hardware from my sciolosis surgery.. though I think it woudl be a good idea, I just don’t know if they could see much with the artifact that the rods would create..
      I think maybe I’ll go see a neuroopthathamolgist.. I just saw a suburban one initially, though he did dialate my eyes (mostly looking for optic neuritis).. i’m SOOO sick of seeing dr’s, but I don’t want to have permanet damage to my eyes!!!
      Thanks again so much I appreciate your help!

    • Anonymous
      March 1, 2012 at 11:25 pm

      Hi bny,
      I am new to this forum. I was dx with CIDP 3 years ago. I have a droopy face with “puppy dog eyes” and deep lines on the sides of my lips which worsen at the end of the day or when I’m sick. Also my vision is affected. There is light sensitivity and vision is blurred when I’m looking down at what I’m reading. I mean to say it is blurry in that downward position. That too is worse at the end of the day or when I’m sick. It’s muscle weakness. I still have 20/20 vision. Glasses can’t even help when I get overtired only rest does. I can only imagine how hard it must be for you to rest but you may be doing tooooo much.
      Have your symptoms stabalized since the onset?

    • March 2, 2012 at 2:35 pm

      Hi BNy(Kelly) can I call you Kelly? Anyway, About the autonomic issues, we had urinary, bowel and breathing issues. Palpitations were an issue too. Once we were on the loads for a while everything went away, about 6 months if I remember. There are no issues now5.5 years later. The eye part sounds like miller fisher variant, the rest could be that you just aren’t getting enough ivig. Not to throw wrenches in the pot, but lupus does have organ involvement and lupus does respond to ivig. They are currently running studies on ivig for lupus and cidp. Do you have the typical red cheeks and red on the bridge of nose. it is called the butterfly rash. Any disc type infections on your face, kind of like a big boil? Sarcoidosis also has organ involvement. I think lori brought up if you have a firm dx yet, do you? How about the spinal fluid protein level, we were 65. Regarding the lessions on the second mri. People with cidp do sometimes have lessions. People with chronic headaches show lessions, do you have headaches? Personally, I think your symptoms sound like cidp, maybe miller fisher variant. I think you just need to find the ivig schedule that works for you.

    • March 4, 2012 at 9:27 pm

      Hi Susan! Welcome, and thank you so much for your reply! Wow, sounds like you have a lot of the same symptoms as I do.. Did you have all the “typical” findings on your LP, and EMG/NVCs, reflexes etc for CIDP? My symptoms not only stablilized but REALLY improved after the 2nd IVIG (first maintence dose).. however then I got a virus (a cold, cough/fever etc) and I guess got a relapse, so that next round didn’t help much.. this last one has helped more again.. but I don’t feel like we have found the “right” dose/frequency yet.. Are you on anything else besides IVIG?

      Dawn Kevies mom- Yup, you can call me Kelly ๐Ÿ™‚ Funny you say that about the palpitations.. not only did my heart rate go up from it’s usual 60beats per minute up to the 130’s consistently, but I also had A LOT of palpitations (leading me to ignore it for a while thinking it was post partum hyperthyroid). The 2nd IVIG took away my fast heart rate, the 1st one took away my GI issues! They did a test according to my neuro (I think a blood test) for Miller Fisher and itw as normal- however, if it was an antibody test then it might be a false negative (I don’t mount antibodies apparently, at least that they have ever been able to measure after illnesses and vaccines etc). Interesting you mention lupus.. My ANA (one of the only antibody tests ever to be positive for me) initially when I just had the heart rate, just not feeling well, was 1:80, and then when my neuro symptoms flared it went up to 1:640.. So lupus is on the table (I have an appointment with a rhemy in April).. though my SSDNA was negative in the past. No rash on my face ever or skin infections. I do have an eczema/psoriasis like rough spots on my legs, but that’s just since started the IVIG.. so I assumed it was an IVIG reaction, as I got small blisters on my palms and feet with the IVIG as well, though not the last 2 times.. It’s strange, but I kind of want that reaction again, when my skin reacted the most, I got the best effect from the IVIG!!
      My Neuro is confident in my diagnosis of “inflammatory neuropathy”.. which she also puts down on the diagnosis sheet as CIDP. My protein was 45 the first time 98 or something the 2nd (however I had meningitis the 2nd time.. so not sure if that skewed it).
      As of now My last dose of IVIG has worked well, not as great as the 2nd.. but pretty well though.. I am afraid it will wear off earlier than the 3 week mark again, and we will need to modify my schedule/dose…. I just don’t know what to do about work- I need to be able to predict my schedule (usually a few months in advance) and be physically able to do a good job… I get insurance through my job, and went to school (and have school debt) for a long time to do what I do.. So, we depend on my job as well as my ability to take care of the kids when I’m not at work … I’ll do what I gotta do, but I love my job, and if I have another set back, I think that might really be in jeopardy. As soon as I think my IVIG may be wearing off I’m going to call the neuro to let them know and ask what to do.
      Thank yall so much!

    • March 19, 2012 at 8:44 pm

      Well, my other symptoms are slightly improved since this last IVIG _ walking etc is WAY easier than it it was a few weeks ago.. but my vision I sware is worsening! I have said it just seems “odd” for a long time, been hesitant to actually say double.. but I thought it was double lite:) anyhow.. now its obvious.. it’s double.. ugh… So I am hopefully going to get into a neuro opthamologist on thursday.. I sware every single thing in my body has been affected by this thing!!! Intestines, heart, bladder, every single muscle, eyes, swallowing, stomach and good ol brain fog too!!! What the heck attacked my body!!!???! Hopefully we’ll get some answers- hopefully good treatable ones on thursday..

    • March 19, 2012 at 9:34 pm

      Honestly it really sounds like miller fisher if cidp is firm. Does your ncv/emg suggest it besides the elevated protein in spinal? Regarding the ivig. We have a scheduled prescription for a year. It gets renewed each year. If you keep waiting until you feel the symptoms, you will keep stepping backwards. You have to stay ahead of theings. If you feelsymptoms at week 3, then it would be a good idea to do them every two weeks. How is the at home treatment possibility going? We use Coram and love them, not suggesting them, don’t even know if they are in your state or if they are, are they any good in your stATE. Just letting you know our experience with them. If it is miller fisher, I do know that Kelly’s daughter required more than a 2g/kg dose to control her eye issues. If I remember correctly, you are not up to a 2g/kg dose yet.

      If you don’t mind, what kind of work do you do? Any chance of getting duties lightened? BTW, in I think the last ig living magazine issue there was an article about people having difficulty in their jobs (keeping, getting hired etc) based on info on facebook pages or info on computer. So be careful what you write, just in case.

    • March 20, 2012 at 2:20 am

      Thank you so much Dawn I appreciate you taking the time to reply! They increased my dose from 30g to 48g this last time and it lasted the longest yet.. finally feel almost normal in my hips again as I did before the relapse… but my facial muscles and all over muscles are still just shakey and then the vision… ugh I’m kind of having a mental break down this week- hubby has been gone for a week and I have been at home alone with the kids and had meningitis again from the IVIG on tuesday so i have felt pretty awful. The vision stuff scares me,, this all scares me.. they seem to be pretty confident of the CIDP diagnosis.. however my EMG/NCV are pretty normal- at the beginning of this (my weakness was first noticed on my knee) I had demylenation on that knee. They did the blood test for miller fischer and it came back normal (however I don’t mount antibodies with the exception of my ANA- never have either does my father -wierd)!

      I am having pretty horrible joint pains as well – started in my wrist at the beginning of this whole thing, and now its in both wrists BAD everytime I move my hands, elbows and shoulders and knees and hips now.. its just crazy!! I just want to go for a jog to release stress, and well ha , that’s not an option!

      As far as my work I probably shouldn’t say (I really miss Private messaging). I went to school for a long time, and have a lot of student loan debt and a lot invested in my career.. I need good dexterity and physical as well as mental ability.. So that’s another stressor.. ugh..As long as I can live and see my kids grow up thats the main thing.. everything else I’ll find a way to deal with it.
      I talked to the infusion center I go to.. they don’t think I could do home heatlh – i’m a hard stick, long slow infusion (can the nurse just come start it and then leave while I do the rest you think? or do they have to sit there the whole time? I am 6 days post infusion and don’t feel a ton of improvement.. and I don’t know what to think of that at this point.. though thankfully no worse! ๐Ÿ™‚

    • March 20, 2012 at 1:56 pm

      bny, these are just opinions and thoughts, so take them for what they are, only you know your body and gut feelings best. So..Regarding the ncv/emg….I forgot, have you had a skin punch or nerve biopsy? Some people do have a normal ncv/emg and still have cidp dx. It just is not typical the way you present. Some is, some not. Protein level in spinal yes, weakness yes, eyes yes if miller fisher. starting at knee, no. response to ivig, sometimes, but sometimes you don’t feel you respond. Unfortunately everyone does not have a textbook presentation of symptoms of cidp. You seem to fall into that category.

      Is it possible for you to go to Mayo, during a vacation time or something? just to get a concrete dx? The way you respond to ivig makes me think cidp like us initially, but lately your response does not seem as good based on your comments which makes me wonder if it is the progressive type. If so, immunosuppressants might be a consideration.

      What about MMN has anyone mentioned that? , Any thought about the Lupus suggestion, the joint pain could be that. Have they tested for rheumatoid? What about just basic EBV?

      If the dx is positive and you feel ivig is going to be constant AND you are a bad stick, I would say a port is inevitable. It will make your life much easier. Not to mention being a bad stick you probably only have a few good go to veins, they are not going to last forever. As well something else that I am thinking of regarding bad sticks cpmes to mind, let me know if you want me to mention it, I don’t want to be a debbie downer. Regarding your inquiry about the nurse accessing you and leaving, some companies do do that, some encourage it, our first one did, but it was not a good experience for us. Before the port, we were not a good stick and the vein would actually blow about an hour into the infussion. The ivig still flowing, it was very painful and wasteful and the stupid nurse could not be back for an hour because she was at a mall an hour away picking out engagement rings!! Needless to say, we do not use that company anymore. Other people do fine with the nurse leaving. One mom who lives in a rural area even gets the access in her childs port herself and does the entire infussion on her own, they live in a really remote area. So there are all kinds of options. If you could find a home healthcare that would set up and leave and use a fannypack, you could probably even do it at work! Then you could recupperate when you got home as opposed to starting when you got home.

    • March 21, 2012 at 2:38 am

      thanks so much dawn, I really appreciate it!!! Yea, as far as my presentation – it’s deifnetely not a straight forward case by any means- ugh, the last thing I ever wanted was to be a “complex” medical case!

      They think, especially with the GI/diarrheal symptoms preceeding the neurological ones that it is some sort of atypical CIDP.. though I have my doubts.. especially since my reflexes are normal at times – I have been told at times they are decreased.. but also that they are hyper (but they have always been hyper).. I started with twitching in my right leg over 3 almost 4 years ago when I was pregnant.. I also had numbness in that foot, but honestly just thought – ah, it’s a slipped disc in my back or something like that.. never thought twice about it.. who knows if that is related or not to this whole issue though!

      Yes, I had a skin/punch biopsy that apparently was pretty abnormal in all samples- I had three taken- foot, calf, and proximal thigh.. This, with the addition of the abnormal autonomic testing made them say it is defintely “inflammatory neuropathy or atypical CIDP”….

      As far as other ideas (about being a hard stick etc).. I’m defintely open to hearing them! I was told by the first Dr I saw that he thought I had ALS.. with a 3 month old new baby and my daughter under 2 years at the time… I still have SERIOUS PTSD from that visit.. I still GREATLY fear it,… I’ve always been a rational person, but I just can’t shake that fear since that visit.. even though I have had THREE EMG’s and over 12 neuros say absolutely not! But when I start freaking out.. it is almost always that particular fear that is seeded deep down making me on the edge of a breakdown! So I welcome any thoughts/ideas on this whole thing!
      THere is another lady at the infusion center who seems to have ALL the same symptoms as me – droopy face, slurred speech- she is getting 100 grams of IVIG every single week and it apparently worked GREAT initially and now is no longer working (after a few months).. we don’t see the same dr and her reflexes are apparently normal/brisk and has had one normal emg and all the others showed cidp..
      no one has mentioned MMN.. everyone seems to think that my sensory symptoms throw me out of that diagnosis (apparently I fail their sensory/proprioception tests miserably). my CMV is now positive, which it was negative at the end of my last pregnancy. I don’t think anyone has checked EBV .. I was told I had mono when I was 15 though.

      As far as Mayo goes I have defintely been thinking about it… Do most people go to their regional university health centers and then to Mayo when they can’t help, or do people usually go there when they haven’t yet seen a university specialist? I go to UT southwestern in Dallas. I have an appointment to see a rhuematologist on the 10th of april.. I am hoping maybe they will be like “ah ha, i know exactly what this is”! haha. but I know I shouldnt get my hopes up! I defintely wonder if I have Lupus- CNS lupus.. I have an aunt who was told she had lupus or some autoiummune issue that did affect her eyes as well.

      I am so numb the past few weeks, and running my hands under hot water makes them tingle like crazy, and the joint pain is pretty intense! It’s all so strange! Thank you so much for your time, i really appreciate it!

    • March 21, 2012 at 4:38 pm

      Hi Bny, Honestly with all that you have going on with little kids, job and the uncertainty of the illness, I would probably pursue the mayo option and just get a dx for everything. There are many on the site who went to the one in Minesota. Hopefully someone will come on with more info as to how you can get there. I am pretty sure you can send all of your reords and they review them and get you in, but it can take months, provided they feel your records indicate and appointment. I think if your doc calls a referral of sorts, you can get inquicker. I am not qualified to answer accurately, through our own experience, just based on what my friend told me of their experience.

      About the other lady getting the 100grams and the ivig not working as well, based on others that have posted their symptoms progressions, it sounds like the progressive form of cidp not relapse remmit. The ivig only holds more progression, does not allow for a full extinguishing of the demylienation, (inflamatory process) So for lack of a better way to explain it, it is holding the fire, but not putting it out. The people in this catagory usually respond well with immunosuppressants and ivig combo, just the suppressants….. Pam h sometimes checks here, or maybe you can search the archives. She went to Minnesota Mayo AND had the progressive cidp AND did the cytoxan treatment and has had good results. She is helpful to others on the site. It is just a matter of how to contact her on this site. Maybe she is on the facebook site. If willing, I think she would be a great source of help for you.

    • Anonymous
      March 22, 2012 at 2:30 am

      bny and Dawn Kevies mom: When I take a shower I get itchy all over – no mater the water temp, it seems to stimulate my nervous system and I start to “wake up” – it feels kind of like I am getting plugged in to an electric box and I am shorting out & blowing fuses all over my body the whole time I’m in:.Zap! Zing! Stab, throb electric shock and then… CRAMP!! then I become an itchy wreck. The itching comes from the inside out and the outside in and starts on my back (where the water first hits) and gradually spreads all over, even extending to places where the water barely hits. It seems to wake everything up and then my feet – then legs – start to cramp up. I have red streaks all over from my body from itching by the time my shower process is done. Two days ago I guess I itched so hard (I can’t feel a thing!) that I broke through the skin between the toes – ugg! Then the fun really begins – big toe goes up, the other toes go down; on the other foot, my toes curl up in a little ball. The calf muscles kick in…then my hands curl in to little balls with the thumbs tight inside. I also have SPS which causes a lot of cramping and seizing up so who knows what is causing which symptom….all I know is that it takes me quite a while to get all the wheels going in the morning, the swallowing to go in the right direction, the meds to kick in so I can get my sneakers on …and to finally be able to look up at the beautiful sky – see the daffodils – hear my kids voices “mom, we’re late!!” and remember why that zany, zappy morning routine is worth going through.

      BNY: A year & a half ago – before IVIG, I felt like the right side of my face drooped; even now I still slur my words and drool, esp when I am tired. In 7/10 I was diagnosed with dysautonomia – heart palitations, swallowing/bladder, voice & breathing, drooling and slurring. Better now but all still there. All of last year I had a dr who had me go through a series of testing to rule out ALS, which I have been told by my current doctor, “you don’t have to worry about that right now.”
      When I am overdue for an infusion there have been times when I have climbed in to the bath – after feeling the water up to my elbows ahead of time – I sit down and realized YIKES it’s burning, burning hot. By the time I can pull myself out, from my waist down and elbows down I am bright,bright red – redder than a bad sunburn. Guess we all know what that means: IVIG!

      So very discouraged right now because of all the horrible side effects from the IV; I know I desperately need the IVIG medicine, just can’t handle the side effects. Last week another bout of aseptic meningitis. Can’t take migraine meds anymore because I just added Cymbalta for the nerve pain and you can’t take them both together.

      Sorry this has been such a long, complaint tilled letter. Next time I promise to include funny stories with happy endings and to find 3 reasons for each day that passes between my postings (one for each of my boys). Perhaps that is a way we can help cheer me us all up!

    • March 22, 2012 at 11:24 am

      PattyO: WOW it is great to hear you say all of that!!! TO hear someone who has been diagnosed as CIDP with so many of my symptoms brings my anxiety down a lot! You mention your three boys.. it’s my kids and me wanting to be there for their futures that makes me fear ALS so much.. among many many many other reasons of course! the hot water thing is so simliar to mine as well!! So why did one dr think you should continue to get tested for ALS? Did you have the typical findings of CIDP? (emg, LP, decreased reflexes etc?) …. I also hear you on the aseptic meningitis – i’m 8 days post infusion and my head and spine is sstill pounding.. we tried barely increasing my rate last time and got good ol meningitis again! but SOOOO worth it if it works and can watch and be there for my kids! You mention your meds kicking in to tie your shoe laces… are you on other meds besides IVIG? Though I can tell the IVIG is working, it does seem short lived and and it worked so much better at first….The slurred speech thing is defintely what urks me the most.. it really worries me.. though no one has heard me slur yet.. I can just tell, but I have no doubts its there! I also have this awful brain fog!! Do yall? It has been worse this week, though my head has been pounding, so i know that doesnt’ help!

      Dawn- thank you so much for the info! I am definently going to think about goign there.. and If i have any further decline then there won’t be any question at all if we try that option! oh what a roller coaster this all is! I think once enough time passes when and if my symptoms stablize more I will be able to relax more, but until then I just am so worried.. Dawn – what was the thing you were going to mention about being a hard stick?

      Thank yall so much!

    • March 22, 2012 at 11:59 am

      Hi there- I wanted to chime in and let you know that I had issues with my cranial nerves when my CIDP was diagnosed and at relapses- I too had many atypical features which led me to the Mayo clinic for diagnostic confirmation. I did not experience a definite obvious droop but had bad facial numbness , difficulty chewing, swallowing weak cheek muscles and my voice was very thready and difficult to project. I also experienced some blurry/ double vision and had some weakness in my eye muscles. I do get facial fasciculations and have even had tongue fasciculations ( muscle twitches) that was truly one of the weirdest sensations I have ever had! That does not happen now that things are under better control. I think so many of us have had the ALS scare and truly only time and knowing as each year and month that passes and realizing that you will be ok will put that fear at ease.

    • March 23, 2012 at 12:44 am

      Sorry bny , I forgot to write about the port. If the dx is for sure, then a port is the only way to go. Makes things much easier!! One stick and in, no worries about a blown vein, sure thing every time. While you are still in the stick mode, be sure to be hydrated, warm showers right before help, or warm compresses on the arm in the general area. Push ups used to work for us while we did not have port.

      To be honest with you, we did not relax until year four, we are almost at year five. We had a dx of gbs by week 6 and firm cidp by 6 months. There are so many trial and errors and research and confusion and doubtfulness in choices and changes in symptoms, it was a constant rollercoaster. It took four years till we were relaxed. Just today I asked, do you think it is your cold? Or do you think your cidp is acting up. So don’t get too discouraged, everyone still has doubts!! It just takes time.

    • March 23, 2012 at 11:50 pm

      Bny–if you decide to go to Mayo—i posted my experience there in earlier posts , but will be happy to answer any questions you may have. I had my dr contact them and forward all my stuff there –so they had everything. they called shortly after receiving my info and set my appt up for two months later, plenty of time to plan travel and lodging. Inexpensive hotel—the value place rents rooms for 180.00 a week. no frills but cheap, they provide transportation to and from mayo.
      Dawn is right —in that they will schedule many tests in a short period of time to get you diagnosed.

    • March 30, 2012 at 2:38 am

      Thank you all soooo very much for all of your help!!!! I REALLY appreciate it!!! My hips and hands have defintely improved with this last round of IVIG- thank goodness!!!!! however my swallowing and all over/every single muscle fatigue is pretty bad… I have that AWFUL skin crawling/ need to escape my own skin sensation all over, which is driving me crazy.. and started to have difficulty breathing again… I feel like I am headed in the direction I was before I got admitted into the hospital…. however I am WAY better in other ways though still…

      Shellbones- WOW.. i’m SOO glad to hear that you are a success story as far as scarey symptoms are!!! I thought I have seen a tongue fasiculation or two.. but when i fully rest it I don’t.. and after the IVIG my tongue had much more strength.. as did everything- thank Goodness… I do have facial fasics every once in a while.. but more so every single muscle is just weak and trembly! The IVIG resolves all my fasiculations.. for at least two weeks, which is nice!!! ๐Ÿ™‚ I agree.. I think only time will truely let me relax about the whole ALS thing.. even though I know it just doesn’t make sense, especially with THREE emg’s being completely clean and all neuros (12+ of them) saying no way.. it’s still scarey!

      I went to see a rheumatologist two days ago (I have had an appointment at the university with this one for over four months- she is supposed to be amazing- comes highly recommended from many different sources)… anyhow she thinks it is sjogrens.. with neuro involvement.. possibly causing CIDP (which I have heard there is a correlation).. I have awful joint pains- definely had some before IVIG, but it has dramatically worsened in the past few months..Anyhow,, she wants me to start plaquenil, and then in 2-3 months depending how it is going add Immuran (has anyone on here tried that for CIDP? I know myasthenia people use it).. and continue my IVIG… SOOO I hope they are right!! I would be SOOO relieved if they are right! ๐Ÿ™‚

      Thanks Dawn… I’m deifntely thinking a port might be a good idea.. I would ideally like to wait a few months and just see how the new meds affect me.. I would LOVE to just take those and no IVIG>. but I know that likely won’t be the case..

      Lori- Thank you! If we decide to go that route I will defintely be asking you more than a few questions!! thank you! ๐Ÿ™‚

      thanks again so much for yalls help!!! Hope yall are all doing well

    • March 30, 2012 at 9:33 pm

      hi there- I am so glad you got in to see a Rheumatologist- I have been on plaquenil for about 6-7 years- I was taking it for possible bechets ( an autoimmune vasculitis) and inflammatory issues which were not fully characterized – then cidp started almost 4 years ago ( as with you considered atypical) saw neuro and rheum at Mayo clinic at this point only on ivig – this past year at my follow up at mayo I was found to have high ANA and RNP antibodies- along with joint pains and new raynauds- so now rheum has dx with mixed conn tissue disorder which is an overlap syndrome with features of many autoimmune diseases such as lupus, Rheum arthritis, sjogrens and scleroderma. I don’t know how this ties in to my cidp except that they are all autoimmune and that my cidp responds to IVIG- so I am currently on IVIG 20 grams every 10 days, Imuran 50 mg per day, plaquenil 200 mg per day and fish oil and a few vitamins. It seems my immune system is just looking for trouble- the plaquenil is very safe and side effects not bad and does not make you more susceptible to infection- helps the joint pain and fatigue a lot! I feel for you as you are going through so many of the things I did- I am still here and living a decent quality of life – pay special attention to getting rest ( not easy with kids I know I have 2) sleep deprivation is the worst and a natural food diet helps too- try gluten free sometimes that helps people feel better as well- I will go back to mayo for follow up this fall for both neuro and rheumatology- let me know if I can answer any more questions!

    • March 30, 2012 at 9:35 pm

      ps- I have a port too- love it ( as much as you can love a port!)

    • March 31, 2012 at 8:11 pm

      Shellbones- WOW, we do have a lot in common!!! I am starting the plaquenil today, so I hope I too see a differnece with the joint pain and energy!! That is one thing I kept thinking when it came to the whole ALS thing.. i kept telling myself that I feel too bad all over/joint pains/ overall feeling of unwellness that it just didn’t seem like that could be it, since from what I have read that is usually not the case with MND. Was your whole body/every muscle seemed to be affected, or was it more lower extremity etc? I can’t remember (have I mentioned that I have this awful brain fog thing too! ๐Ÿ™‚ They are also saying I have reynauds as well, and as far as the scleroderma thing goes.. i’m not sure if devleoping calus like feelings on the ends of all your fingers would be related to that or just dryness from sjogrens, but I have suddenly developed thick/calus like skin on the tips of every fingertip!!! And it’s not like I’m doing more physical activity/hand work than normal!
      What made them make the decision to add on the immuran in addition to the IVIG? Your dosing sounds nice too – as inconvient as going every 10 days would be, to have a smaller dose like that woudln’t take as long or hopefully have as many adverse effects!
      As far as rest goes, that is defintely my biggest problem, first of all two kids 2 years and under, then a demanading job, which is shiftwork (I go from nights to days and days to nights etc all the time – so my internal clock is messed up)! I have always been on the go, so this whole body forcing me to slow down thing is difficult, and I defintely don’t get enough rest..

      Funny you mention the gluten free diet!! Since this whole thing started after my IUD/transfusion debacle and was followed by some major GI symptoms the GI dr thought I had a gluten intolerance/autoimmune issue triggered by the IUD trauma, so I went gluten free- i would have done ANYTHING to feel better! I have been very strictly gluten free since (a year now almost!) In fact last night we had a long over due date night and went to our favorite resturant and I broke my gluten free streak just by having a little soy sauce.. I haven’t decided if I should continue gluten free or not.. I probably will for a while until all of my symptoms stablize.. it’s just not worth it, no matter how much I want a REAL cookie! ๐Ÿ™‚
      Thanks again for all of your help! It REALLY helps to hear a success story of someone who had so many of my symptoms!!!

    • April 1, 2012 at 1:37 pm

      Hello again- to try and answer your questions I started Imuran about 18 months after my initial dx of CIDP due to needing IVIG every 7 days it was very difficult to maintain that schedule and I was still getting relapses – the hope was the imuran would stop the relapses and allow me to extend ivig- after 1.5 years on Imuran I can say that I went a year without major relapse and am now getting IVIG every 10 days- I do have a lot of fluctuation of my symptoms with good days and bad days for sure- at some point I will probably try to go every 2 weeks with ivig- not sure when .
      you mention feeling callous on your fingertips that can def be from raynauds – typically scleroderma causes swollen tight fingers that they call sausage fingers. I don’t know if I would call myself a success story as I am not cured but I am living with it and able to lead a fairly normal life – I have not given up hope of cure but for now I am not a candidate for stem cell as I am not weak enough – I am interested in sq ivig to get better control of symptoms – I might pursue trial being done in NYC at weill medical center – not sure if I am a candidate as my other autoimmune stuff may eliminate me –
      When I first got diagnosed and started treatment the CIDP dominated my life physically, emotionally – now I still have to deal with it but it no longer dominates me- it is just a part of my life that I have to deal with and I refuse to let it win- you will find balance in time and I hope they find a regimen that works for you with the least impact on your life
      I did get the biopsy for celiac ( done through an upper endoscopy of the stomach) which in my case was negative.
      I feel for you with young kids- my kids are older now teen and pre teen – I don’t know how I would have handled toddlers! I cannot emphasize how important rest is- Do you have a disability policy through work? Many policies have partial disability that let you keep working and make up for lost income from reduced hours- not sure if doctors can give note you your employer to say you can’t work overnights? I fought it for awhile but eventually went on partial disability- now work about half my previous hours and I wish I had done it sooner- it really helps to be able to self care. Hang in there!

    • April 13, 2012 at 2:13 am

      Thanks so much shellbones! I really appreciate it!!! I need to check out my disability with work.. i actually had no idea that you could get partial disability! that would be great! We did our life insurance right after my son was born (before the IUD thing happened and I got sick), we talked about getting private disabililty, but since I am young and it is expensive we opted aginst it – Opps!!!! Work is great to get away from all the other stressors (though i have a very stressful job.. i have always been an adrenaline junkie and liked working in stressful environments like that).. but I am not working near the amount of hours I used to (my poor paycheck shows that- add in more stressors, plus all the medical bills ugh)! I imagine my dr’s would give me a note to say no overnights.. but I just can’t do that to my coworkers- i’ve worked with them for a while now, and they have been so understanding with all of this mess. that I just couldn’t make them all pick up my slack in that way.. I also am stressed about the immunosuppresants, I don’t think Ill be able to keep my current job if my immune system is down.. so I have no idea what I’m going to do.. being the breadwinner I need to have a successful job.. it will be a big change if I can’t do it anymore..
      Did you notice when the immuran “kicked in”.. does it take up to a year? or is it immediate? I am already having improvement in my joint pains from the plaqunil.. I hope it improves overall energy too- EVERY muscle is just shakey.. I had a long dr’s appointment this week and just wanted to go on a run to relieve stress like I used to.. so I had a bad mental day just realizing how different life is now.. but I am VERY thankful I am still walking!!

    • April 13, 2012 at 12:24 pm

      I fought going on partial disability for over a year and after my third relapse I finally realized that I was not doing myself a favor by trying to to “everything” – I think many women have this mentality of doing it all- I also love my work and spend many years in school to be able to do what I do- I finally came to the realization that I was hurting myself and indirectly everyone who depended on me by putting myself at risk by not really honestly dealing with the cidp. Fortunately my work disability policy has a partial disability clause so I could continue to work at reduced hours and the policy fills in the missing income. My policy did require that I stayed out on total disability for 6 months before being eligible for partial disability ( weird huh?) Many policies are written that way. At first I was like a lost puppy, but then I actually started to heal once I gave my body the rest it needed and was able to engage in physical therapy etc. I think it is worth exploring for you –
      In terms of Imuran it did not kick in until about 9-12 months – I work around sick people all the time on Imuran so far no major issues but I am on a low dose – I do get sick when my kids are sick however but can’t avoid that! Hang in there !

    • April 16, 2012 at 8:29 pm

      Wow Shellbones – sounds like we have A LOT in common!!! I can’t believe you work around a lot of sick people too, but I’m the same way – I only get sick when my kiddos or my direct coworkers get sick, as I’ve always been a bit of a germ phob at work and am hand wash crazy! ๐Ÿ™‚ I will check with my company to see if we have a partial disability, as I think that would be best.. I think I am having another relapse too AHHH! I got a cold/3 days of fever from my kids.. it was just a fever that hung on! I thought I got out without any issues, as my IVIG had kicked in and I was feeling quite good.. about 2 days fever free, I was at work and suddenly my feet started getting very numb- lidocaine injected numbness.. this then hit my hands too.. and other wierd symptoms followed this all happened over about 2 days.. didn’t seem to cause much focal weakness, just the all over wiped out/muscles all shakey kind of weakness.. I thought I would just wait 8 days from today for my scheduled IVIG… however I got out of bed this morning and my foot feels like lidocaine is still in full force, so I went ahead and left a message with the clinic to see what we should do.. I’m SOOO sick of Dr’s appointments/talking about it/testing etc.. that I just want to ignore it! But, I know that won’t help me any.. so we’ll see what they say!
      As far as the Imuran goes – wow thats a long time for it to “kick in”.. when you say it kicked in, do you mean your symptoms got better, or simply halted, or stopped getting relapses? Do you know why some go with Imurane, while others go with cellcept? My neuro seems to like cellcept for a lot of her patients, but then the rheumy likes imuran… Do you stay out of the sun with your dosage of Imuran? Thanks again and So sorry for all of my questions!!! Hope your doing well!

    • April 17, 2012 at 11:54 am

      Hi there- hope you are feeling better and sorry to hear you are still having ups and downs- It took very aggressive IVIG for that pattern to stop for me ( weekly) – to answer your questions about imuran, I was still getting weekly ivig for the first 10-12 months of treatment and my symptoms did slowly improve but also helped stopped pattern of relapses. I did try cellcept but did not tolerate it due to side effects in my case. I don’t stay out of the sun per se, but live in the great lakes region and we don’t get a lot of sun here- when I am in the sun I wear a hat and sunscreen – more for the plaquenil than the imuran. Don’t apologize for your questions- the more you know the better! Take care

    • April 17, 2012 at 8:32 pm

      Thanks again so much for your help!!!! It is so great having someone to relate to, especially since it seems we have so many similar symptoms!!! I just heard back from my dr and they want to increase my 48g IVIG every 2 weeks… I know that I have needed to increase the frequency for a while, but just kept thinking maybe we could get it under control with every 3 weeks, as finding the time every 2 is going to be hard.. but I know I need to (as I type this my hand is burning on fire with numbness – it is sooo wierd- when I bend joints, use them, they are exposed to heat, or rubbed by clothes the numbness and burning sensations go through the roof!?) So hopefully that will do the trick!!!

      May I ask what your side effects were from the cellcept? Do you have any from the Imuran? You know, I’m not that familiar with plaquenil, so I didn’t even know there could be sun sensitivity with it!? I have been pasty white for about 5 years due to being busy/pregnant etc.. so was going to go on a three day mini vaca with the kiddos and soak up the sun (since I haven’t in ages), I’m glad you said something – I used to not burn much (though as white as I am now I”m sure I would), but I might have turned myself into a crisp! Does it make you burn more easily? or cause a rash? Thanks again!! You have helped ease my stress in many ways, especially kowning that Imuran hasn’t caused you to get sick more at work- I have worried about what I was going to do with my career if it came to that!

    • April 17, 2012 at 8:48 pm

      I am glad to offer my experience in the hope that it helps others! I am glad you are getting more frequent IVIG- Hope it helps – keep your eye focused on the long game even if it means you have more stuff to deal with in the short game- you are trying to prevent long term or permanent disability and this is the goal of aggressive treatment and it can be done – CIDP is a tough opponent but don’t go down without a fight- my doctors have always laid out a goal of normal or as near normal function as possible not a goal of fair or moderately disabled – it sounds like you have a good team who are listening to you – it is an art form and requires good two way communication.
      I had terrible abdominal pain and cramps from cellcept, stomach pain , nausea , dizzy and terrible insomnia like the worst I have ever had- absolutely exhausted but unable to sleep (not usual for me)- I stuck with it 3 weeks but side effects were not going away
      Plaquenil causes increased sun sensitivity which can be both rash, itching and burning
      I think getting IVIG offsets immune suppression from Imuran a bit – it gives you some passive protection from infections ( not all but some) keep the questions coming!

    • April 25, 2012 at 6:16 pm

      That’s good to know!!! I always wonder why neurologists tend to prescribe cellcept and rheumys Immuran (though with Myasthenia, it seems that Immuran is used more maybe)… I never thought about the IVIG “balancing” out the immunosuppresants.. that’s a good point. My next neuro and rheumy appointment is in May.. so it will be interesting what they all say/think as to do.. So far I haven’t had any adverse effects with the plaquenil (except maybe some minor GI issues the first 2 weeks or so, but not bad at all).
      Thanks again so much for your time, and answering all of my millions of questions!!! ๐Ÿ™‚

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