Positive ANA anyone?
December 12, 2011 at 9:09 pm
So, I am still in diagnostic limbo.. hoping to start an IVIG trial within the next week, however in the meantime they ran a few more labs to try and get reason for insurance to pay for the IVIG.. My ANA came back high at 1:640, which from what I read online (good ol dr google) looks like it would mean that “something” autoimmune is going on.. Have any of you had elevated ANAs with CIDP? My pattern was homogenous and speckled, if that means anything, it looked kind of nonspecific from what I could find. ANyhow, I was just curious if that was common with CIDP/polyneuropathies? and I also wonder if that means they can use that to get insurance to someone more easily cover IVIG? I hope so, but most of all I just hope the IVIG helps, and stops this process that has taken over my body!
December 13, 2011 at 1:20 pm
Ah the plot thickens! When I was first diagnosed with CIDP my ANA was negative although I had other autoimmune issues. Now my ANA is highly positive 1:2000 range. I also have raynauds and some joint pains, fatigue, etc. Lupus ( one cause of many that can cause positive ANA) can cause a peripheral neuropathy in itself or it can be simply an associated condition. People that get autoimmune stuff are at higher risk of getting other autoimmune stuff. There are other more specific antibody tests they can run to help sort things out. If you have not yet seen a rheumatologist , I recommend you do so. It is good to coordinate care. I know how scary all of this is especially as you are working toward a diagnosis just keep in mind that autoimmune conditions including CIDP are considered treatable and most patients are living their lives and doing well.
December 13, 2011 at 10:04 pm
Thanks!!! I haven’t seen a rheumatologist yet, but I will plan on doing so for sure! I must say I had a sense of relief when I saw that positive result (it was only a 1:80 months and months ago before the neurologic stuff started, but when the initial GI part of this whole thing started), so something has gone way up!! But as you said, since autoimmune things are typically treatable, I felt relieved, after the scares of untreatable diagnosis that have been on my plate the past few months, hearing something autoimmune and confirmed by a lab test makes me feel better!!! I think I should be getting back even more bloodwork tomorrow (LEMS, and a few others that were sent to Mayo.. and then we are adding on MUSK tomorrow- though I have constant focal weakness and atrophy so I’d be an odd presentation of those, though apparently I’ll be an atypical presentation of everythign else too, so It’ll be interesting!)!! I am soo excited to get a diagnosis, and start a treatment, especially when it means that the diagnosis isn’t ALS.. i feel like after that scare I can deal with anything else!… That is really interesting that your ANA is so high too!! Did they find that you had lupus? They are goign to check a SSDNA and a few other things based on my ANA I guess.
They moved my skin/nerve biopsy up to the 21st of december now! Maybe that will give us some answers too!!!
Thanks again so much for your help!
December 14, 2011 at 2:56 pm
So glad they got your biopsy moved up! In answer to your question, the rhematologist feels I have Lupus or Mixed connective tissue disease or some overlap of the two. You have a great and positive attitude which will take you far as you go forward! With autoimmune disease everyone is unique so not uncommon to be “atypical” ( I prefer special !” ) –
December 14, 2011 at 11:22 pm
Thank you shellbones, I appreciate it!!!
yea your right – with all of this autoimmune stuff everyone presents so differently.. I wish that all universities would do a “team approach” like Mayo does.. I could just go for a few days and see a rheumy, neuromuscular doc, GI, etc etc.. and they could all get together and have a pow wow and then give me some treatment already!!!
I am getting SOOO much worse the past 3 days, it’s really crazy.. My chest hurts when I try to take a deep breath (I noticed a few weeks ago when I went to sneeze and inhaling I had all over chest discomfort) I just feel short of breath and SOO weak all over! My facial muscles barely move, and I can barely stand up for more than a few minutes without having to sit down due to muscle fatigue.. Then the paralysis of my fingertips is worsening too, as is tongue/speech.. this is just crazy! I am all for being “special” as long as someone can get me to a better functioning better feeling special!! I am MISERABLE!!!!
Thanks again so much for your help!!! 🙂
December 15, 2011 at 1:58 pm
I am so sorry for your suffering- if you are declining and getting worse I would get on the phone to see if they want to do a trial of ivig – It will not change results of biopsy or other tests so should not affect your diagnositic process-when I was first hosptalized it was friday pm on a holiday weekend but I got the treatment I needed. I am very concerned about your shortness of breath and chest symptoms and would get those checked out for sure- I would think that that alone might merit a visit to the doctor or emergency room to rule out pneumonia, pleurisy ( which can be autoimmune) or respiratory muscle weakness from neurologic cause- these can all be treated but if untreated can lead to a real emergency- do you have good support at home with family members and or friends?
December 15, 2011 at 3:07 pm
Thanks Shellbones- yea I am feeling pretty crumby to say the least.. it’s all getting worse so fast, so is the muscle wasting in my hands- which is scarey.. I talked to the univerisity this morning about it all, and still haven’t heard back.. I’m just so sick of having to tell them my symptoms- They hear certain symptoms and seem to ignore others, so my husband is calling them and the previous neurmuscular neuro that I really liked to see if someone can help sooner than later.. They keep ordering more tests and then waiting until they get back.. and then ordering more.. Things have just really gotten worse the past week for some reason.. ugh.. We dont have any family here, but will in a week for the holidays thank goodness.. I have some great friends if need be and my hubby (poor guy is stretched thin with the two kids and work already). Ugh.. I’ll let ya know what they say when he talks to them.. I don’t like to be dramatic or call back after calling once, but he tends to get the message across better.. I”ll keep ya updated.. not the most fun I’ve ever had!
December 16, 2011 at 5:27 pm
Thanks for your reply- good luck and dont forget that you are the only one who can know what your own body feels like so don’t be afraid to trust your instincts and advocate for yourself- Nobody can do it better than you . Keeping a symptom diary can help too with possible triggers and things that make you feel worse or better- keep us posted and wishing you the best
December 16, 2011 at 8:11 pm
bny806—hoping you get some answers soon. My diagnosis took a while too–and even at that it ended up as ” atypical cidp” because it doesn’t fit in to anything else exactly.
It’s just too bad they can’t at least get you started on ivig since it’s usually the first treatment anyway. Most of us on this board, with the many differential diagnosis….but we all have the same basic treatment options–ivig, PE, steroids, immunesuppressants, chemo.
In my case my emg/ncv was abnormal, my lumbar only slightly above normal, nerve biopsy showed inflammatory process, and an abnormal anti-body (vgkc) I don’t think any one of these individually would have given definite the “cidp” diagnosis…but rather the combination of everything together led to that diagnosis.
Hang in there and be persistant…..if things get worse rapidly you always have the option of going to the ER. Maybe then they would admit you and get the tests all done at once instead of doing one at a time and having to wait forever.
I remember that testing phase, it’s very stressful not knowing. My thoughts are with you 🙂
December 17, 2011 at 9:41 pm
Thanks shellbones and Lori! I appreciate it!! Yea the diagnostic limbo phase is defintely scarey… I just want to know if i will stop worsening or hopefully improving! Just continuing to worsen and have no answers is quite scarey
Things worsened dramatically the past 5 days or so.. started having some difficulty breathing, heart rate was high as well.. went to the dr and they admitted me.. Started my IVIG trial loading dose last night and will be in the hospital for a few more days getting more.. along with MANY more tests..
As much as I don’t want to be here, I think it is good that they are testing a lot of different things and at least trying IVIG! I Just pray it works! i’m so scared it won’t work and then I don’t know where that will leave us
How long did it take yall to notice any improvement with the IVIG? THey keep saying how I sound like GBS.. though it has been going on for a whlie now.. EMG is clear. . so who knows! MG is on the table as well, atypical presentations of everything.. I wonder if when I leave here if they will give me prescriptions for steriods or any other meds, or do you just go home and see if the IVIG kicks in usually?
Anyhow.. time will tell I guess! thanks so much for yalls help!
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