How bad do symptoms need to be before tests show abnormality?
January 19, 2014 at 6:19 pm
I am now stuck in diagnositic limbo and I would love to hear your experience. When did your tests begin to show demyelination and slowing? How bad were your symptoms at the time?
My situation: I am an otherwise very healthy female, 37. Had a flu shot last fall and then began to have weird symptoms shortly after. In the past 3 months, I have been experiencing progressively worsening numbness, tingling, prickling, burning sensation in hands, feet, arms and legs; hands and feet go completely numb at upon waking up; muscle ache, soreness, mild cramps; legs, arms and shoulders all feel weak and noodle like and floppy; intension tremors in hands and feet; decreasing dexterity in hands, (started to affect my typing this past week); worsening balance (been affecting my walking gait for a few weeks now); shaky vibration sensation all over; fatigue. I still can walk but have cramps and tire easily.
All my symptoms have been slowly but surely getting worse. I have no doubt new symptoms will appear. It just sounds like a typical case of slow onset CIDP triggered by a flu shot.
Then last week, which was 4 months after my flu shot and 3 months after the onset of my symptoms, I finally had a round of tests from my new neurologist. I was really hoping to get a firm dianosis, but all my tests came back normal. NCV, EMG, spinal tab. Extensive blood work. Clean MRI of neck and head. Negative ANA. Normal segmentation rate. No diabetic or thyroid issues. Basically picture perfect everything.
While my symptoms slowly worsen and clearly indicate something is not right, without abnormal test results to back up a diagnosis, my neuro is adopting a wait and see approach, which makes me very very nervous. I am at a loss at what to do?
Any advice? Those of you received all normal tests but have CIDP, how did you finally pin down your diagnosis? Just wait until you got worse and things finally showed up? How long did it take? I hear it could take years. Anything else I could ask to test?
Many many thanks in advance.
January 19, 2014 at 7:10 pm
Is your knee reflex gone? That was the first test which indicated neuropathy for me, but by that time I could barely stand. My case isn’t comparable, because when I had the spinal fluid test I couldn’t stand at all (it supported the (then) GBS diagnosis. My paralysis was well advanced before I had NCV and EMG tests. The MRI is to rule out other causes, so it should be negative.
A nerve biopsy can be used to support a diagnosis of CIDP in uncertain cases, but it usually isn’t necessary. The presentation of symptoms alone was sufficient for my neurologist to make a preliminary diagnosis.
January 19, 2014 at 7:42 pm
GH, thank you sharing your experience. My reflex was still there as of last Monday. However I am progressing little by little everyday so I am kind of a moving target these days.
My biggest worry is the delay of diagnosis and treatment. I just don’t know what to do anymore. I know there is a small percentage of CIDP patients who test normal in everything. Looks like I might be one of them.
January 19, 2014 at 9:51 pm
In my case the onset of symptoms was rapid. I went from normal to quadriplegic in ten days. In contrast, many members here report a long and gradual process before treatment was finally authorized for them.
CIDP is a complex disease to diagnose properly due to the number of variants that doctors must rule out before prescribing treatments, especially when the major tests for CIDP come out negative. Some doctors may be afraid of jeopardizing their own practices, or risking legal actions against them, and are reluctant to authorize treatments until after a confirmed diagnosis. Whatever the reason, it can be frustrating and scary to have to wait for them to act.
It sounds like you might have one or more of the many variants that can mimic CIDP symptoms. The following site has a good review of the variants from a female’s perspective: http://cidpusa.org/variants.html Dr Engel is involved with this site, I tried to get in to see him when I first got GBS/CIDP, but was unsuccessful. Read through these to gain some additional knowledge about what you might have. The extra knowledge could help you steer your doctor in the right direction and get your treatment process started.
Best wishes for success!
January 21, 2014 at 3:46 pm
Jim-LA, thank you for your reply. You and GH and others have been nothing but kindness to me, guiding me through this difficult process.
I think it’s very likely what I have is a relatively typical and relatively slow (but not as in taking-years-to-show-up slow) onset CIDP, currently in its early stage. I simply have no other explanations for my symptoms.
My neuro laughed at the idea, saying if it’s triggered by a flu shot, it’s either GBS or acute onset CIDP, never slow onset CIDP. But I know that is not true from reading this forum and livingwithcidp.org. I have read from many posters who got slow onset CIDP after vaccinations.
Right now, all I can do is to wait till my nerves deteriorate enough so damages can be seen on EMG and NCV. It’s terrifying, both physically and mentally. CIDP can start slow and turn nasty in a flash. And my biggest fear is I am one of those who will always have normal tests despite of severe symptoms and nerve damages.
I wait and pray for a positive test and a diagnosis.
AnonymousJanuary 20, 2014 at 2:16 pm
gslm-Im a 35 year old female and just had the flu shout in the fall and have been feeling weird symptoms since about two weeks after. I was just wondering if your symptoms vary each day? Are some days better than others? Are your legs affected one day and your arms the next or is it your entire body most of the time? How long after the flu shot did your symptoms start and was it symmetric right off the bat? Was your burning just in your extremities? I feel totally lost just like you and I’m just looking for answers. This has been the worst three months of my life.
January 21, 2014 at 3:51 pm
jb, my symptoms started 1 month after the flu shot and are more or less symmetrical. They fit typical CIDP to a T.
If you think you have CIDP, get yourself to a neurologist as soon as you can. Ask for EMG, NCV and a spinal tab and hopefully one of them tells you something. The earlier you are diagnosed the better your long term outcome will be.
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