New here – possible CIPD?

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).

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.

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.

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

Treacle? I had to look that one up. Must be a UK thing. The UK has a support group.

http://www.gaincharity.org.uk/

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.

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