Neuro thinks possibly CIPD, but wants to wait
November 6, 2011 at 9:23 pm
Hello, i’m new here and am in desperate need of ANY advice/insight on my body that is apparently not so happy!!
Here is the saga:
had a baby 8 months ago (was on heparin during pregnancy due to MTHFR)- 6 weeks post partum had an IUD placed- it perforated my uterus which landed me in the hospital getting blood transfusions. Right before I had the IUD put in I had a wicked virus (presume coxasachie/hand foot mouth- temp up to 103, diffuse muscle aches, sores on hands feet and in mouth/throat).
I obviously felt weak from the anemia for a while.. but never seemed to recover.. and in fact got worse.. I realized one day when I looked in the mirror that not only had I lost my baby weight (40lbish) but I looked THIN (i’m thin to begin with) I was 16lbs lighter than I had been in over a decade..
I then realized I had gone from having one bowel movement a day/every other day my whole life to up to 20 a day.. everything was passing right through me.. I kept thinking this would resolve itself- i was too busy with work and 2 kids under 2 to stop and think much about it.. Finally I got so weak I could hardly hold a spoon up, much less hold my kiddos.. I got severe stomach pains and landed in the hospital again – my heart rate wouldn’t go below 120 and I was having all these bowel issues.
I went gluten free at that time (i have familyhistory of celiac and lupus).
colonoscopy/endoscopy showed gastritis and esphoagitis otherwise normal
Thats when the wierd neuro stuff started.. the same week I went gluten free and my intestines seemed to get better (from 20 or so bowel movements a day down to 3 or so) I started gaining weight (still eating gluten free).
First it felt like my right knee was “floppy” then I realized I was walking with a waddling gait (my hips feel weak/akward when walking with my feet close together) I also started waking up at night with my right leg and both arms feeling like they were asleep- but painfully so.. ALL Night long every night this happened.then one week later my forearms ACHED and felt really weak.. I started noticing akwardness in my dexterity in both hands and loss of fine motor skills (which I need in my job).
I then had all over muscle weakness where straining to go to the bathroom I barely have muscle for. I also began twitching/fasiculating all over my body- EVERYWHERE! (I have twitched after exercise/walking since pregnant with my daugher – I was ver ill with her- hyperemsis and on heparin 3 years ago, so it was only the all over twitching that was new).
I have loss of function in my thumbs and all tips of my fingers (like jello fingertips. My thumbs just don’t work right for 6 weeks now)
The neuropathy/falling asleep/tingling pains/sensations then moved up from my wrists, to my elbows, then to my shoulders and neck..
Now I am feeling like I am having swallowing difficulty (choked twice today), My tip of my tongue is numb and my speech is slurring when saying certain words.. My legs and arms – everything feels as if it has concrete blocks on it
My face is also super fatigued.. If I smile or laugh my facial muscles ache out of fatigue and then tremble if i push them anymore.
I had an EMG that showed diffuse neuropathy (as the neuro said – my sensory and motor function is like that of a 90 year old- i was running and working out before the IUD). The first neuro said maybe CIPD.. but we’ll just see what happens.. ugh.. 2nd opinion neuro doesn’t raelly know, but is running LYME and Lupus tests on me and started me on lyrica for the neuropathic pain (which is helping me sleep finally)
My MRI head and neck – normal, labs all normal so far- including heavy metal, B12, chemistries , thyroid. (my b6 was twice the upper limit of normal- I stopped all supplements at that time, but things continue to worsen). My first ANA was 1:80 and abnormally speckled, 2nd ANA was normal. Stool studies thus far normal.
I need help- I am now really freaked out about the tongue/speech.swallowing issue. My neuro just wants to wait for the lyme and lupus tests to come back, but I’m getting nervous.. I don’t want to loose my speech .
ANY ideas, would be GREATLY appreciated.. I don’t know what to do from here!
Thanks in advance! (sorry for writing a novel)!!!
November 7, 2011 at 2:17 pm
nope, I got hospitalized at the beginning of it when the GI flare happened..(dehydration/malnutrition). I was shocked the neuro who suggested CIPD was just like, well we’ll just wait and see what happens.. meanwhile I’m getting worse.. I have the numbness/tingling feeling that moved from my leg up to my hands and forearms, now in my shoulders and neck.. I feel like I”m starting to have swallowing and speech issues.. does that happen with CIPD??
We just got back from my GI appointment, and he is going to try and get us into the university neuro here in Dallas.. he wants a “team” approach.. I’m freaked out right now with things worsening by the day..
AnonymousNovember 7, 2011 at 3:56 pm
You need to have a spinal tap to read your protein levels. That is how they found out I had CIDP. If you get one, make sure you lay completely FLAT for at least 6 hours so you don’t get awful headache.
Sorry this is happening to you, hope you get some answers, keep us posted, we really do care and will help as we can.
November 7, 2011 at 9:02 pm
Thank yall so very much for taking the time to reply,, it truely means so much to me! Do yall think this sounds like CIPD?? its wierd the odd sensation/numbness/pain tingly is moving up now into my shoulders neck and chin and tongue.. did yall have symptoms like this?? I still very much fear worse things like ALS… my reflexes are “normal” as per the dr’s… though they have all my life been very brisk.. We used to kid around playing with reflex hammers in school about how brisk my reflexes were, so i do think they are decreased from that..thats just in my knees my other reflexes are pretty dull i believe. did yall have any swallowing/numb tongue issues?
walking is getting increasingly difficult.. like i have concrete in my shoes..it’s scarey
AnonymousNovember 7, 2011 at 9:22 pm
Bny the EMG would have indicated ALS. So if the neuro. didn’t put that in your differential diagnosis, then it isn’t a worry. My hubby did have that in his differential dx., but thankfully it was ruled out. I think your symptoms sound more like GBS than CIDP. But either way, you need early treatment. Keep us posted.
November 7, 2011 at 9:38 pm
thanks so much laurel.. Yea initially the dr (it was a physiatrist) said he was concerned for ALS (this was a friday afternoon) and then said we’ll do the EMG monday morning – talk about a BAD weekend.. i was a wreck, breaking down in tears everytime i looked at or thought about my little kiddos.. then he did the EMG and said it was good (didn’t include the face since i had no facial/bulbar symptoms at that time). Then the neurologist I saw a week later said it was a crumby EMG (talk about panic starting to build the second he said that), but that he wasn’t concerned for ALS, mostly since i’m young and have sensory complaints..
I guess I have fears at times that the EMG wasn’t done accurately and maybe they missed something, or they didnt do bulbar/face maybe something was missed.. but then i have to calm myself down and think I was already having hand weakness then, so it would have shown up. I tell ya under that much stress the mind plays tricks on ya!
I would defintely prefer GBS since it sounds like that “usually” resolves itself faster/more completely, but I’m not entirely sure. All I know is it’s freaky to loose function and it be creeping up into my face/head now, along with all over getting worse..thanks again so much for your time! I hope your husband is doing well!
AnonymousNovember 8, 2011 at 8:06 pm
Bny hubby had the excessive saliva symptom and sort slurred speech –so I was freaking out about ALS too–during the waiting for diagnosis period. Turns out the excessive saliva was acid reflux and with all that saliva it made him sound slurred. Things will be okay Bny.
AnonymousNovember 8, 2011 at 9:35 pm
I also have CIDP and had a spinal tap done. If the spinal fluid is high in protein it is a good indication that you have CIDP.
Call your docs and ask for one. Also ask for IVIG.
Don’t wait, call the office and leave a message for docs saying you want this done.
November 9, 2011 at 3:16 am
thanks so much yall.. It’s hard to shake the ALS thing until we can find another diagnosis… after a dr telling us he was concerned for it, with things progressing It continues to scare me.. especially with 2 kids under the age of 2yr..
We are goign to call tomorrow and request an Lumbar puncture and to start IVIG.. i have a question for yall though- how “bad” do symptoms have to be before one “qualifies” for IVIG in general.. i feel all over weak, like concrete in my shoes and hands.. but have permanent never improving weakness in both thumbs and all fingertips..I notice with everything I do every single day, and I have a job where i must have good fine motor skills/dexterity.. I almost can’t do my job now.. but when the neuro tests for “clinical weakness” i pass all of their easy tests… i feel like they want me to have complete wrist drop/foot drop before trying a treatment for this all.. waht are yalls thoughts?? I just want to get better, and I don’t want to wait till i’m permanetly out of a job or have permanent dysfunction to get a treatment/IVIG started.. thanks again in advance!
AnonymousNovember 10, 2011 at 2:56 am
Hi bny806. I think it all depends on your Dr. I performed miserably on the strength tests…it really depressed me as before that I hadn’t fully realized just how weak I was. My spinal fluid was normal though so my dx is tentative. my dr. was willing to give me ivig right away though I did speak to another Dr. on the phone who told me he only gave it to patients who were already severely disabled! i already could hardly get up the stairs and into my house but that wasn’t bad enough for this guy!
I know the feeling re: als fears. I felt that way too, especially since most of my tests were normal except the emg/ncv and some inflammation. i have not had a nerve biopsy–too afraid of all the pain but e\wanted to go ahead with the muscle biopsy however my dr. said i have to do both or otherwise it wouldn’t be a complete study…what bs…let’s try one thing at a time please… anyway, it sounds to me you should definitely be getting tx! but have you had mri and spinal tap yet? if i were you i would go see another dr. you can’t sit around and wait when you’re already feeling so bad and can not perform your job properly, that’s ridiculous.
November 10, 2011 at 9:51 pm
Thank yall so much!!! Yea, it’s hard to know when it’s time to initiate a treatment like IVIG i think, I mean I guess one person can be fairly weak, but it not interfering with there activities of daily living all that much, while another may be less weak, but it interferes with there daily living more- depending on what they do each day.. I know i’m still able to do a lot, but to feel so lousy, and weak all the time is miserable, and hard if i can’t do what I went to school for so long to do or take care of the kiddos.. I had another EMG/ncv test today- now looks like no CIDP but benign fasiculation sndrome/isaacs syndrome (which i guess can cause percieved weakness and some weakness/stiffness) so they put me on an anti seizure medication which apparently can help the muscles function better.. so we’ll see! I’m hoping it will help! I’m just sooo thankful that this was a better/more detailed EMG/ncv test performed by the neurologist himself , and he said no als.. phew!! best words i’ve ever heard!!
thanks again yall for all of your help and good luck, wishing you all of the best!
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