Can someone provide me with medical research regarding ‘relapses’?
AnonymousJune 11, 2010 at 6:37 pm
We say we have them, yet we aren’t always ‘tested’ at the critical times. I truly don’t expect that there are actual medical ‘standards’ for diagnosis of ‘relapses’, But? I’ve relapsed and I’d like to know IF there are standards and protocols for treatments.
Especially as I’m later this month going to get ‘re-evaluated’ regarding my CIDP? Essentially, I’d truly like to know what kind of mud I’m going to have to slog through.
I KNOW the criteria for diagnosis? As well as where the fuzzy areas are… But nowadays, insurance companies are demanding more documentations – What are those documentations?
Simply put? I want to go into these tests with my sawed off shotgun [and I HATE GUNS?] Being Prepared to shoot down all wrong or undocumented ‘philosophies’ that seem to steer docs off course.
Any ammo for this all? I’d appreciate – knowledge IS power! And we’ve got to know more than we do at times? I’d really love to have a vacuum clear out all the medically caused cobwebs in my brain, but -I guess that’s for the future? Hope to all! And less pain for sure!
AnonymousJune 11, 2010 at 7:19 pm
I guess it depends how often you relapse and how is your doctor.
I’ve relapsed many times over the years, I do keep records of all of them. After blood work,I call the lab and get them to fax the results to me too.About a week or so after a hospital stay I call or go and get my records. I have books and books of it. over 14 years I ve had to repeat some tests such as spinal tap,MRI,CT scans, Nerve conduction, emg,etc not too often but I have. The blood work has been repeated many,many times.
Also depends on what kind of treatment you are in. IVIG,prednisone, cellcept,plasmapheresis, ect. how your relapses come back.
Everytime I have one I compare my tests, take all the records to the doctor in order and explain it to him.
I always keep in mind that even though he has been my doctor for 12 years he forget things (77 yrs old,but excellent) so I kind of try to remind him how it was the last time and what we did. I shoot everything at him like you said. I’m always prepared with records and research. He trust me and knows Im very proactive .
Remember that they see so many people on a daily basis and our cases are not common ,so you need to be in charge. Like you said “KNOWLEDGE IS POWER”.
Now Im here at NWH on the second part of my stem cell transplant. Which is my last hope of having a better life. But without the research I did and the records I have I wouldnt have never gotten here like I did.
I wish you the best and if you have any question you can contact me anytime
AnonymousJune 13, 2010 at 8:16 pm
Relapse Patterns May Help Discern Guillain‐Barré from Acute CIDP
Neurology Today 20 May 2010; Volume 10(10); p 10 SAMSON, KURT
A Brief summary-
Note- A-CIDP = acute CIDP
“The team’s initial observations were reported in a brief communication in Neurology in 2005. In that study they compared 11 patients with GBS and 13 with A-CIDP and concluded that A-CIDP should always be suspected when a patient diagnosed with GBS deteriorates after nine weeks, or when a patient experiences three or more treatment fluctuations.”
You really do need to read the whole shebang. enjoy…..
AnonymousJune 13, 2010 at 8:54 pm
In this case it is the study authors making the determination of what is a relapse.
“Relapse was defined as worsening after improvement with an increase of 4 points or more in the NIS score (see methods – treatment and outcome).”
for more on the NIS-
It would seem there is a standard called “The Neuropathy Impairment Score.” Therefore, any worsening of your own score would seem to indicate a relapse.
Quoting from them:
“Dyck’s gold standard is a composite score he calls the “Neuropathy Impairment Score (Lower Limbs) + 7 Tests” (NIS). The NIS is an evaluation of muscle weakness, a decrease or loss of reflexes and a loss of sensation. There are also scores for the patient’s age, gender, physical fitness and anthropometric features. The “seven tests” are peroneal motor nerve conduction, velocity, peroneal compound muscle action potential, peroneal motor distal latency, sural sensory nerve action potential and tibial motor distal latency, heart-pulse rate decrease with breathing and vibratory detection threshold.1
The comprehensive system also includes algorithms for determining a quantifiable score. This quantifiable score leaves little question as to the diagnosis of DPN. However, for what this system offers in specificity, it is an impossibly difficult system for the private practitioner to utilize and would seem better suited for the specialist or researcher who needs the detail for comparison studies.”
AnonymousJune 13, 2010 at 11:36 pm
In that you are assuming that I’ve a diabetic PN leading to the CIDP. I do NOT. I have been tested more times for this aspect than one could wish for, desire or care to have!
Please take a look at this oft cited ‘site’ and see where it can take one?
Try a read at this resource? URLhttp://www.aarda.org/infocus_article.php?ID=28URL
Next? URLhttp://www.aafp.org/afp/980215ap/poncelet.htmlURL and DO look at the charts?
Definitively? Diabetes was off MY medical list from the get go. Still is! And I’ve been following the ‘program’ of diet and meds [IVIG] with regulation. No variants there. I have a definite autoimmune response and it’s doing a number on me. I went ‘downhill’ last year starting in March. Now? It seems to be happening again. I am not a happy camper? I am likely scheduled for more testing in the near future? But I do suspect it will ALL be inconclusive. WHY?Because I’ve a heap of other ‘mitigating factors’ coming into play. And, all of those other factors can mess up the most simple of #’s for an ‘immune-mutated person!’ No one knows which of which what factors are ‘contributing’? All [B]I KNOW[B][/B][/B] is that at times when I walk now? I lose whatever strength I’ve re-achieved after an injury. It is disheartening at worst? At best? Just a ‘bummer’.
Try this source also URLhttp://www.iasp-pain.org//AM/Template.cfm?Section=Home&WebsiteKey=ab2d1c7a-069c-4ec9-a5b4-022117666cddURL And READ! EXPLORE and LEARN.
Try this one? [url]http://www.paineurope.com/index.php?URLq=en/book_page/what_is_painURL[/url]
You will find that there is NO definitive definition of pain/s and there is no constant standard of PAIN as we know it.
Sad state of affairs in my humble opinion? It IS SUBJECTIVE and there are no/zero standards for degrees of pain that we might suffer. IF we can get beyond this? We mite get treated in a timely manner w/few long term consequences.
Yuehan? I admire your researching for crumbs of hope? But LOOK at that ‘Trial’? TEN PEOPLE? That’s not a trial… medically that’s ‘casual observance’!
And I do not want to chew nails or wood to get me thru this all? My docs now are GOOD! I am grateful. AND LUCKY!
Right now folks? I’m looking for either a smoking gun or a very large 2″x4″ to start swinging. [tho not to my current docs?-it’s the prior ones who let me down big time!] I am getting to the point where I feel my ‘immune system’ will start eating me up? And, then in a couple of years? You won’t have me to nudge folks!
Hope and hugs and LEARN all! Defend yourself from IGNORANCE or Laziness in the medical community [Who, by their own statements IS NEVER WRONG-except for the lawsuits?] Go get those docs’ brains working and working for YOU!
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