Csdp??

Hi Elmo,

I have been diagnosed with sensory CIDP. On my nerve conduction tests my sensory responses are absent and so are my f waves. I also have absent reflexes.
My Neuro told me it is the sensory form of CIDP.

Hope this helps 🙂

Kazza

I believe the Lewis-Sumner variant of CIDP is mostly sensory…not 100% on that though.

Emily originally had sensory & motor losses. The sensory came back much faster than the motor. I remember she would wash her hands in freezing cold water & didn’t realize how cold it was.

Kelly

I think the CIDP that is more sensory is DADS. Hubby has CIDP-MADSAM also called Lewis Sumner and he has conduction block and basically no sensory symptoms–his primary symptoms are atrophy of muscles and loss of muscle strength.
Laurel

As before that, a Sensory PN diagnosis. Now after six years a recent relapse has affected the whole neuropathy issue and It’s truly a case of a POLYNEUROPATHY! It’ll just get at you more on some things at different times! In terms of diagnositics a person can fit into many of the diagnoses descriptions, tho some more comfortably than others. You have to work with your neuro to pin-point the very BEST BOX to fit into…so to speak.
More important tho? IS HOW YOU RESPOND TO VARIOUS TREATMENTS! And, that you try those treatments and see if you get ‘along well with them’.
Each and every one of us has a different tale to tell, as to how we ‘got it’ and how we were diagnosed, and then/still are treated.
It might be small comfort? My neuro of 5+ years seems to write down a [I]different[/I] diagnosis each time I’m seen! I sometimes wonder IF he’s testing me? OR changing his mind on that particular day! It sure keeps me guessing!
Neurology isn’t an exact science, it’s part training, instinct, trial and error, and I always hope….a dollop of curiousity!
As for diagnosis? I ‘used’ to get some good web sites that outlined all the testing required for say: IVIG or plasmapheresis…things the Insurance Co’s need by way of testing before OK’ing any treatments.. They are getting super hard to find these days! I don’t know why these policies are being kept ‘secret’, so it’s appearing, but that’s how it is. Should I find any good ones? I’ll let you know!
You would likely want to know a cause? That, may never be found. But treating what IS is far more important for now and the future! And even more important is that you find a treatment that WORKS for you!
Keep at it, it will happen as it should. But, never give up on trying to get some semblance of normal back into your life!
Once you know more about where you are medically? And then learn about what to expect? You have knowledge that is empowering. And all that knowledge, in the long run can help save your life and enable you to be better than you are now!
Hope always!

Hi there

Like Kazza, I have a predominantly sensory CIDP. It is quite painful. I did not have GBS at all, but it appears that I caught a virus that caused some trauma to my nervous system, and caused the problems.

My reflexes are absent, and I have very little appropriate sensation below my knees and past my wrists. It ranges from total numbness through to spiky painful pins and needles (and everything else!)

While sensory variants are less common than the motor variety, the treatments appear to be the same. At the end of the day, there are only a few treatments anyhow! So, good luck in finding things that work for you.

Cheers
Deborah

[QUOTE=Debs]Hi there

Like Kazza, I have a predominantly sensory CIDP. It is quite painful. I did not have GBS at all, but it appears that I caught a virus that caused some trauma to my nervous system, and caused the problems.

My reflexes are absent, and I have very little appropriate sensation below my knees and past my wrists. It ranges from total numbness through to spiky painful pins and needles (and everything else!)

Cheers
Deborah[/QUOTE]

[FONT=”Arial Narrow”][SIZE=”2″][COLOR=”Navy”]Exactly the same here. Neoplastic origins.
I consider myself fortunate … so far, anyway.[/COLOR][/SIZE][/FONT]