Quix, heard from the NIH neuro

Hi Quix.  The NIH neuro said that three independent neuros all said NPH when they saw my brain MRI.  This despite the fact that CCF and Phila university hospital neuros and neuro-radiologists all said "normal" brain atrophy, "normal;" T2 lesion perpendicular to the ventricles and "normal scattered subcortical white matter T2 hyperintensities.  

I am going down to NIH on Sunday.  Will have SSEP, neuro psych testing, neuro-opthamology consult and an endocrine consult.  However, they also want to do a LP and drain ALOT of fluid to see if it improves my leg function.

The NIH neuro said this is the only chance to see if I have a reversible curable neuro disease.  Otherwise I may be looking at steady decline.  So I am scared, nervous and very confused.  Why didn't the half dozen neuros and radiologists see this??  Who should I believe, I wonder.

I know that since I only have one lesion the odds are against me to get a diagnosis of MS.  I am concerned that if the fluid is drained from the brain then what happens to support the healthy brain tissue if the fluid is sitting in the atrophied tissue?  Would the brain tissue collapse?  These are some of the questions I am going to ask.

Just wanted to give you an update.  I am allowed to refuse any tests I want to refuse and the LP will be done under fluoroscopy, unlike the other NJ nightmare.

[monotreme]

Sorry...hit the enter key too early.  I wanted to ask how your parents are doing?   Now I will sign off since I didn't do that either on above post......Craig

[Quixotic1]

Good to hear from you!  Well, as far as I can tell NPH is a real zebra and probably not seen by the typical neuro (or seen and is missed).  The other thing you could do is fax a letter to Dr. Morrow (let Marsha know you are doing it) and explain to him that in your desparate search to find someone that wouldn't just say, "Your MRI is normal for age, I'm sorry you can't walk and you're getting worse," you also contacted the NIH.  They are making the call of "Normal Pressure Hydrocephalus" and want to work you up, including draining a large amount of CSF.    You have no intention of wasting his time, but you feel very confused and frightened.  Does he feel like your MRI and history is more consistent with MS or NPH?  Explain that you're not  "shopping" for anything other than someone to take you seriously and to support you all the way to some diagnosis which makes sense.  As several doctors in other fields had told you that they suspected MS, but the neurologists had just blown you off."  

There  is a chance he won't respond or will tell you to choose one way or another.  He might offer an opinion.  It is a thought.  I can't predict whether it would burn that bridge.  He does have an ego, but he doesn't "lead" with it.  But, he also does not like to have his time wasted.

He made the diagnosis of MS in me with just one atypically placed brain lesion (deep frontal lobe).  that was before the positive LP.

If you want to have no chance of marring a future relationship with him, then go with your gut.  Ask the people at the NIH them what the risks truly are if they drain off a large amount of fluid and that is not the problem.  I suspect it is not a great risk as it would be done under the guidance of a neurosurgeon.  I am impressed that this guy was so concerned with you and your prognosis, that he sought other opinions and contacted you again.  I doubt it was becasue he had nothing else to do.

My parents are truly doing fine.  Thanks for asking.

Quix

[monotreme]

Thank you for your response Quix, I know you are busy.  Tomorrow I will fed ex the cd's since his office said I could do that, and write Dr. Morrow a short letter, stating some of the things you said tonight and a week ago.  You have had very good suggestions and I respect your judgement.

Being at the mercy of a disease is so hard isn't it??  I mean, now even my six children, my mother in law and sister in law all have to change their schedules to help us since the NIH wants my wife to accompany me.  And our kids are asking me if this is just going to be another doctor who ends up not helping me.  They are all so discouraged.  And two of the kids have Aspergers syndrome which makes it even harder.

Thanks so much Quix and I will be in touch.....hope you have a peaceful weekend...Craig