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kov
Okay, I've been in the ms world for the past 2.5 years.  I had just had bladder surgery for urinary problem that I believed were from having children and getting older. I was reading a book with my feet up when I noticed that both feet felt like I had cut the circulation off.  Thinking it would go away, I didn't get too upset.  Well it didn't go away and my world completely changed.

Long story short, after 8 MRIs, a lumbar puncture, all of the evoked potentials, nerve conduction studies,and numerous neurological exams, I was bounced from doctor to doctor.  I finally got to the ms clinic at Johns Hopkins in Baltimore.  I had at least 9 lesions on my brain MRI and all of the other tests were negative. I should also tell you that my blood was tested for all of the possible viruses, vitamin issues, infections by several doctors and it all came up that I did not have anything.  

My Johns Hopkins neurologist dx me with PPMS.  My symptoms have progressed, but I still can walk. The numbness in my feet has moved up my legs to my knees, I have banding tightness around my abdomen, and my head and around my teeth gets tight.  I have shooting pains in my lower jaw.  The fatigue is unbearable and I stopped working.  I just saw a urologist and now have to cath ever 4 hours due to inability to feel the "urge" and empty my bladder. I am also having trouble with balance and my shoulders and arms are really weak.

I was recommended to participate in clinical trials for PPMS by my neurologist at NIH.  After getting the entire work-up again, the NIH team could not give me a PPMS dx because there were no lesions in my spine.  So what should I do next?




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572651 tn?1333939396
The NIH team should not exclude you from the dx of PPMS for a lack of spinal lesions.  But the spine usually does show atrophy as part of the process.

What next?  I would follow up with NIH and ask what type of MS they think you have if its not PPMS.  And even more important. if its not PPMS. then what disease modifying therapy have they recommended.

Now's  the time to be asking questions of your medical team.

be well,
Lulu
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kov
I have asked all of the questions.  They tell me they don't know what to think because it is nothing else.  They want me to come back in 6 months and are hoping to see progression. The crazy thing is that my Hopkins doctor was sure it was PPMS.  I'm not sure if I should go back to him or not.  I hate to start this with yet another neurologist.

the NIH team are pretty young.
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572651 tn?1333939396
You are being seen by some of the best- We hear lots of good things about JH and the NIH teams have extremely high standards.

Sarahsmom (Julie) is being treated through NIH and talks about the strict standards in diagnosing anyone for any disease.  They have to be 110% positive in their diagnostic work since they are doing all this research.  

Changing to anther neuro is always an option, but starting over at square one would be a drag.  If any new symptoms come up before your 6 month wait, be sure to call their offices and report the change.  

Sorry I neglected to issue words of welcome to you earlier - I don't remember crossing paths with you before.    I hope you will find the information here useful for your needs.  We have a  few PPMS folks here and perhaps they can help with your questions too!

be well,
Lulu

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kov
I know that I am in the best place.  I guess I have to wait and see.  I am glad NIH is so strict, but it is frustrating because they cannot tell me anything.  There is no real treatment for  PPMS anyway,

Thanks for the welcome.  It feels good to talk to someone else.
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338416 tn?1420049302
With 9 lesions on your brain, I think that would fit the McDonald criteria for definite MS.  Whether or not it's PPMS is uncertain.  

For more on how they diagnose MS, check out our health page on the McDonald Criteria.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36
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1140169 tn?1370188676
I have at least 9 brain lesions, and my radioligist report says "does not fit the McDonald criteria for MS". I thinkg it's because of the shape and location of them.

Mike
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338416 tn?1420049302
They need to be periventricular - in other words, located next to the ventricles of your brain.  At least according to the McDonald criteria.
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