Can someone provide me with medical research regarding ‘relapses’?

Homeagain,
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

Thank you,

Rossana

Relapse Patterns May Help Discern Guillain‐Barré from Acute CIDP
Neurology Today 20 May 2010; Volume 10(10); p 10 SAMSON, KURT

here: [url]http://www.aan.com/elibrary/neurologytoday/?event=home.showArticle&id=ovid.com:/bib/ovftdb/00132985-201005200-00009[/url]

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…..

[url]http://jnnp.bmj.com/letters?first-index=21&hits=10[/url]

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.

See: [url]http://www.podiatrytoday.com/article/5252[/url]

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.”