Droopy Face!

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!

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”!

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!

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 🙂 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!

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..

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! 🙂

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!

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!

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!!! 🙂 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! 🙂

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! 🙂

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

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! 🙂 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! 🙂
Thanks again for all of your help! It REALLY helps to hear a success story of someone who had so many of my symptoms!!!

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!!

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! 🙂 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!

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!

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!!! 🙂