Welcome to the diagnosis? maybe process

July 5, 2007 at 11:28 pm

Always keep in mind that diagnosing any neuro disorder/order/condition/disease….is through the process of elimination, often a long protracted process…A site I picked up on is ‘neuroexam’ which explains what a neuro should do to you during various parts of an exam and why…..Also, remember that sooo many other medical issues mimic/imitate/overlap CIDP or GBS…
Do a search for ‘spinal tap’ and you will learn far more about the good and bad things about spinal taps than you ever wanted to know… Then later, should a neuro want to have nerve conduction studies done…and all those OTHER eccentric tests.. [I admit, I’ve only had 90% of them] that you go, schedule and do…and follow up with a zeal that makes the docs KNOW you aren’t a scaredy cat. Be clear about what you know/learned, but not about the whys and hows…to all concerned…just let them know you are ‘curious’? Sort of make it clear that it’s the relief of PAIN and weakness that are your first priorities..The whole why thing will be rumbling around in your brain forever. Getting good treatment is FIRST and foremost so things don’t deteriorate! It isn’t caution, it is PREcaution that can stop that.
From my own experience, I’d had a pneumonia about 4 months before my CIDP onset [called sub-acute…but at that time..IF I’d known what they’d meant..well I would have punched their lights out!] It was the nerve conduction studies and the spinal tap that were my saviours sort of…It only took visits to 3 neuros to get the testing and diagnosis then treatment..14 months. Which is somewhat rapid in this day and time…I believe ‘bubbleboy’ had the speedy diagnosis record? Am I wrong?
B-12 when really low for long periods of time can result in neuropathies, but, never, do I recall, on one side primarily..Certainly can’t hurt to do mega doses of ‘methol cobalamin’ sublingual [under tongue] B-12 tablets..If you need them you will asorb them…if you don’t it’s like vitamin C…passes thru the system.. The more you take up to 2000mcg should be OK…The whole nutrition thing really confuses me…and I get more and more confused when reading about meds+ some supplements at the same time…Maybe Jerimy or Norb could outline how they do supplements, for a different set of perspectives on what each does and why…
I am afraid I’ve gone on too long…but, did you have a bad cold or flu a couple or few months before? That connection could be of note. Hope this helps in some way.. just know that whatever…you are not alone in the fears and scariness of the whole THING.