New here – possible CIPD?
March 26, 2015 at 12:00 am
I am currently being evaluated for symmetric (hands and feet sensory symptoms) and wonder if it could be slowly progressing CIPD? It has been 8 months now since the onset of sensory symptoms in my hands and feet. Just wondering if CIPD can have a long delay before the onset of muscle weakness?
So far no weakness of the muscles and I just recently passed a neurologic exam testing strength, balance, sensory, and provocative tests.
EMG showed minor carpal tunnel in both sides. No other abnormalities.
MRI spine completed (no results yet)
MRI brain coming up soon
March 26, 2015 at 12:39 am
Like you my CIDP was slow to develop, but mine became confused by myself as more symptoms of Buergers, which I also have. So I didnt report mine for almost a year after the first signs.
I am only just beginning to learn more about this disease and am coming out of a bout of shingles right now (lovely, Not).
March 26, 2015 at 12:56 am
So can CIPD be purely sensory? I don’t even have the weak feeling let alone true weakness.
March 26, 2015 at 1:28 am
I didn’t understand one word in three there! 😀
but, one thing I have learned is that there are as many variations of CIDP as there are hot dinners! My own seems to vary hour by hour , let alone day by day – from total numbness up past the knees and very hard to ake the legs work at all to just a slight pins n needles in them. The arms are beginning to be the same way as well.
I should also add that I am in the UK, so our treatments and names for things are likely to be different to yours, as such I’m unlikely to be your best source of answers mate, sorry. I was really tagging in to learn a bit more myself.
March 26, 2015 at 9:55 am
CIDP has some generally accepted diagnostic criteria including clinical presentation, spinal fluid analysis and EMG/NCV. As noted, each case of CIDP has it’s own variations.
In my own case, I was ‘misdiagnosed’ with carpal tunnel and, possibly cubital tunnel. I subsequently underwent some useless surgeries.
Here is a good description on CIDP courtesy of Dr. Lewis: “Signs and symptoms- CIDP typically starts insidiously and evolves slowly, in either a slowly progressive or a relapsing manner, with partial or complete recovery between recurrences; periods of worsening and improvement usually last weeks or months. Most experts consider the necessary duration of symptoms to be greater than 8 weeks for the diagnosis of CIDP to be made.”
It takes someone familiar with CIDP, and it’s variations, to make an accurate diagnosis. Sensory symptoms are common, such as tingling and numbness of hands and feet, but usually motor symptoms predominate.
Again, from Dr. Lewis, “EMG is a critical test to determine whether the disorder is truly a peripheral neuropathy and whether the neuropathy is demyelinating.” And, “Sensory symptoms are common, such as tingling and numbness of hands and feet, but usually motor symptoms predominate..”
Here’s my laypersons take- sensory nerves are smaller, they go first, thus the tingling, numbing and burning sensations. Motor nerves are larger and it takes longer for the myelin sheath and then axonal damage to occur.
Do yourself a favor, ask your neurologist about their experience with CIDP.
March 26, 2015 at 10:10 am
That does sound very much like my case to a T, starting slowly with the lesser nerves and now becoming a slow problem with the actual movements in my legs mostly, but to a degree, my arms as well. On a lot of days now I find it quite hard to get the legs to actually walk, almost as if I am walking through treacle
March 26, 2015 at 11:15 am
Thanks for that info. I have no actual numbness. Only the paresthesia (tingling, burning…etc). I would consider my sensory symptoms to be severe (not minor). It feels like my hands/wrist and feet/ankles have frostbite or severe sunburn.
On what basis were you diagnosed with carpal tunnel? My EMG specifically found minor slowness across the carpal tunnel only. No hand weakness or any other nerve issues.
I am trying to figure out if this is possible atypical sensory CIPD or is it SFN (small fibre neuropathy). Any way to distinguish these two via specific tests?
March 26, 2015 at 12:07 pm
After some more reading it seems that the pure sensory version of CIPD will always show long fibre damage resulting in some degree of loss of joint position sense and vibration sense. In severe cases this leads to sensory ataxia and sensory ataxic gait (difficulty walking because you can’t feel where your feet are).
This might be how they can distinguish from small fibre neuropathy where the damage is in the small fibers.
March 27, 2015 at 10:30 pm
Treacle? I had to look that one up. Must be a UK thing. The UK has a support group.
CIDP has specific features that an ‘unaware’ EMG/NCV tester may not recognize. And, it is unlikely a patient would understand them either. This is particularly true in the less common variations. In my case “they” missed (at least) the “Absent or prolonged F wave latencies” described by Dr. Lewis. And, nobody mentioned the fasciculations (muscle twitching) for years. Wikipedia says: “Fasciculations arise as a result of spontaneous depolarization of a lower motor neuron leading to the synchronous contraction of all the skeletal muscle fibers within a single motor unit.”
The muscles will look as if they are shaking. These are not major cramps. They are little twitches that do not go away over time.
Dr. Lewis discusses EMG/NCV test findings here: http://emedicine.medscape.com/article/1172965-workup#a0721
In addition, there may other blood, lab, and even genetic testing to be done to exclude other conditions.
I suggest, and did do it myself, finding a neuromuscular specialist. In my case, it was at one of the Center’s of Excellence recommended elsewhere on this website.
Please study the entire Dr Lewis report. It is over 9 pages long and includes a page on differential diagnoses.
March 28, 2015 at 12:52 am
Yes i am in the UK and have been to that site already, they only have a stupid facebook group, i loathe facebook.
You describe it as muscle twitching, for myself it feels like a small electric current is being switched on and off in my legs, but hundreds of times a min. It isnt painful as such, but does make standing for any period of time difficult
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