MSCARE and NARCOMS

[Lulu54]

If you haven't done so before, be sure to register at NARCOMS - North American Research Committee on MS - they gather patient data to share wit scientists worldwide.  They are affiliated with the MS consortium.  You can register at narcoms.org.

Once or twice a year they will ask you to fill out an online survey about your disease progression and lifestyle changes.  This is a painless way to participate in research.

The Consortium of MS Centers (mscare.org) always has great information if you are interested in learning more.  They have posted their most recent journal and the lead article is about pulmonary dysfunction - interestingly the authors report that all MS patients have pulmonary changes.  We've kicked breathing around here enough I thought this might be of interest to read.  

The also have a great report on Optic problems associated with MS, and it includes fascinating photos of normal and abnormal eyes.   You can check out the latest journal at

http://mscare.org/cmsc/Current-Issue.html

[Lulu54]

S- If I were dealing with a pulmonologist, I would print a copy of that research and hand it to the doc.  It's time to enlighten a few more medical folks, don't you think?

be well, be proactive,
L

[Sumanadevii]

Thank you for the info Lulu.  I just finished up a battery of pulmonary tests.  The pulmologist (sp?) knew zero about MS.  My spiral scan, xrays and ultrasound all came back clear.  He diagnosed it as COPD.  He based it on the lung function test.  My neuro said it is caused by a lesion on my brain stem.  The pulmologist could not answer a simple question.  It was... how can we be sure it is COPD and not the lesion on my brain stem?  Do I need to go on a stronger DMD since it has become worse?  He played dodge ball with the question.  I guess my next neuro appointment decisions will have to be made.

It really is a lonely battle when physicians have no clue.