Yeah,

Its not Freakin Rocket Science, c’mon, just another autoimmune causeing specific symptoms. When the PA comes into see, I say, Just Go, you don’t even have an name badge. I’m not gonna spend an hour trying to bring you up to speed, like c”mon, go treat an ear infection or something. LOL

I still believe that for most, this illness is going to take them where it wants to go. I had a very quick dx of GBS, (changed to CIDP 8 wk. later,) & was given 5 PE while still walking & functional. I then continued to deteriorate almost daily, & within a few weeks after that was started on IVIG. Still I continued to deteriorate rapidly. I ended up with one of the worst cases of CIDP that Mayo had ever seen, no matter what treatment I received, I didn’t get better.

For those who have the slower progression of CIDP, meaning a decline in months or even yr. I do not believe that a fast dx will make that much difference. I believe that this illness will progress based on where it is going to go. That the whole progression has been predetermined. It is different with the relapsing/remitting people who can be virtually paralyzed for months, get IVIG, & get up & walk. Some suffer axonal damage, some do not, why is that? JMO…

It is possible that you could have the very slow progressive form of CIDP. I do know a few on this forum who started out as you have. But you say you have no numbness, have you had any of the tests for CIDP, such as a lumber puncture?

These tests that have been mentioned are all good for getting a dx of CIDP. I had 3 lumbar punctures in all, a sural nerve biospy, a lip biopsy (to rule out Sjogrens), 4 complete MRIs, 2 EMGs and nerve conduction studies, a CT-scan, and also a back surgery to remove nerve roots. I was at Mayo & think that this was a little bit of overkill.

CIDP is an illness of the peripheral nerves, usually beginning with tingling & numbess of the hands & feet & ascending up the arms & legs after that. It usually involves not just lack of feeling & numbess, but also weakness in these areas as well. It does not happen rapidly, as in GBS, but over weeks or months. It also tends to be symmetrical, what happens one one side is usally happening on the other as well. Fatigue may or may not be evident as well. I also lost my taste for food, was unable to eat anything for about 3 weeks, as it all tasted like metal. Hope this helps you…
Pam

I noticed that you put maxed for this dx.Since when do insurance companies divide by diagnosis? Selah has a lifetime max of 2 mil no matter what it is for. I feel for your situation and think you have been given good advice.

Just a thought as I read your post… What about POTS? I have a cousin with that who faints often & presents with similar problems as yours…

I will say one thing about Mayo; one rarely leaves there without a firm dx. They do tend to test you with every test imaginable, but I guess in retrospect (for me anyways) that is a good thing. After my 3 months there & what seemed like a zillion tests, they told me I only had CIDP & nothing else going on. Geez, only CIDP, I think that is enough in itself. Sad to see you leaving, but I hope you will do well with your new dx…
Pam

Just a few things about CIDP I have learned through experience as well as this forum the past 5 years. CIDP is usually dx via elevated protein levels (above 45 is normal), EMGs or nerve conduction tests, &/or a sural nerve biopsy. It is a peripheral nerve illness, so usually begins in the hands & feet & ascends from there, up the legs & up the arms. It tends to have marked overall weakness, but can also include sensory loss (usally does.)

It tends to be brought on slowly, in terms of weeks or even years as opposed to acute GBS that can be just days in onset. There is usually a fair amount of pain, but it is normally pain caused by nerve damage, that is why so many of us take neurontin. Joint & muscle pain are not as common in CIDP. It also tends to be a symmetrical illness, what is going on on one side of the body is usually the same on the other.

I only included all of this because I am just wondering if you don’t have something else also going on to cause you so much pain. Just don’t make the mistake of blaming everything on CIDP, it is possible there could be something else in addition to this. I just worry as you seem to have an extraordinary amount of pain. Fatigue & short term memory loss are associated with most of us who have CIDP, however.