Welcome and have hope and don’t give up.

September 25, 2007 at 2:09 pm

First off, I am sure not only I, but others will chime in here and say that you are DEFINITELY NOT a ‘scaredy cat’! The things that are happening to you and your body are truly frightening issues…no two ways about it! OK?
I’ll try to address your issues on the basis of my own experience and maybe it will help you understand some things?

Reflexes: I had what is called a ‘sub-acute’ version of the ‘chronic’ CIDP onset. Meaning that after the antagonist [pneumonia] went away [sort of] about 6 weeks after the pneu. all-clear I started getting NUMB in my toes and fingers. Numbness kept creeping up the foot and fingers to the point 5 weeks after that I’d called my GP who told me to go to the ER. While waiting in the ER my numbness in the hands proceeded to mid-way to the elbow, and the foot issue was just below the knees [took 12 hours for it to spread so fast] I had been a fairly active person before the pneu., slowing down afterwards but still moving about quite a bit.
AFTERWARDS for about 6-9 months, I still had reflexes…I believe residual, now I have little or any at all 4+ years into it [even w/PT exercises] It often takes a while for the damages to be done and ultimately show in testings. I had four Nerve conduction tests in my first year and none after that. The basic ‘boink’ at the reflex points show that nothings happening. It is not something to be discouraged about tho. BTW My breathing thru out it all never seemed to be affected [tho allergies, pneu. history and other issues should have made it so]. I do not personally think that it’s soo unusual per-se, just lucky for you on your part! One good thing?

Fatigue: Oh my yes! The fatigue after being in then out of the hospital was HORRID! Took me 10 minutes to get out of any chair -if lucky? and the idea of ‘walking’ around a small store seemed overwhelming. Once finding a neuro who didn’t think all of it was in ‘the head’…even tho early Nerve conductions tests He’d done showed problems….I simply asked for PT! I knew I was losing leg, ankle foot, hand, wrist and arm strength and quickly…to the point I almost felt as if I was spraining ‘something’ or other just in the simple acts of getting up, down, cleaning etc. The PT helped/helps a LOT…just be sure and clear that you want to go into a PT program that gives you the tools or resources to be able to keep it up at home…w/o expensive equipments. There are lots of good things to be done here that help w/balance deficits, and strength issues. Even learning how to walk properly with a cane, and a cane that’s the best height for you!

Eyesight; This is a quirky one, for me and a few others. It’s not listed as a symptom, but, I got an appetizer a month before my numbness stuff started: I went in for my annual eye exam as I’d had cataract surgery over a decade before..I thot there were changes..when I’d gone to my optomotrist, it’d changed a LOT…then right before the worst, the script went BACK to what it was before? There were BIG changes, tho temporary. After starting IVIG, I had vision ‘clouds’ intermittently…3-6 times a day, often lasting an hour or more. I was lucky to see a ‘neuro-opthamologist’ who ultimately diagnosed it as: non-aura migraine…tho the issue abated, I still have ‘foggy vision’ moments. Worse tho, I cannot NOT for the life of me, read either a book or a magazine since I got the CIDP! I can ‘read’ stuff endlessly on my computer, but I really miss the several books I’d been reading each week! I really feel like I’ve lost something special. But, life changes, and goes on.
Maybe it’s because I can’t FEEL the pages anymore? Dunno.

Soo, with this background, and that of so many other kind people here, expect anything and everything. Then, appreciate that all of those possibilities do NOT happen to you!?
We have all come here by different circumstances and roads….Don’t ever feel that asking a question is ‘silly’. Sometimes those ‘sillies’ are the most important questions to ask….Read back to prior posts and you will find that you are NOT the only one to ask questions. That is how we all learn, and keep doing so! You can and will get well, it just takes a whole lot of time [years sometimes-no quick fixes for this] Wish I could say it were possible, not yet, but in the future? Maybe?