Response to my confused post...

[Sunnytoday]

So, after your thoughts, Quix's and Elain's great posts, and my mom's "uhummmms"...

First, we are going to postpone my trip to NYU in Dec. unless they tell us they have found something new, or can assure us they will tell us something different than "I don't know". That's a lot of money to spend for that again.

Next, we are going to wait to do the seizure testing unless they can tell us why it would help exactly, and how it would give a diagnosis. If I take my medicine on time and get enough rest, they are better controlled now- I'm only having about 1 every two days, and then if I am tired, I will have more (I've had up to 14 in one day of what they are calling seizures).

Then, we are going to try to find a doctor somewhere, possibly NYU becuase we have other dr,'s there already that works on rare neuro cases. Dowma, if you are reading this, can you msg. me your dr.'s name? Or if anyone else knows of a neurologist who is good, let me know, at this point we are thinking outside of MS, but at some point we may go back to that idea. And as you know, we are quite willing to fly out of our small town.

Basically, if you (dr. K and H) are soooo sure it's not MS.... then why see an MS dr.? Why not see someone who can help, such as someone who deals with other neurological dieases of the brain, etc.? I actually asked them that in the e-mail and they wouldn't do it to refer me to another neurologist, just gave me that pat answer.

Ok, so that's the plan for now......

A good nights sleep and your input helped my very fuzzy brain realize that we are NOT going to do anything fast here, when they are not going to hand over any answers soon..

Last, but not least, if I go downhill in a week or two I will e-mail them, and go to my PCP and raise cain until some-one does something. I'm not giving up without a fight, and a big one. I realize i may never walk normally again, but I am not going to live the next 60 years in a wheel-chair without having made sure that every white coat in the U.S. had a say in it.

Grin, I think I'm getting better, and I think I'm going to be ok. Like you said, making a decision just makes you feel better, doesn't it!! (but my dad isn't going to be happy... he's going to take convincing again)

~sunnytoday~
PS I wore out my new shoes in 5 days. Holes right through to the toes, from dragging my feet. how am I to ever keep shoes on my feet? Any brilliant ideas?????????????? The last pair had lasted almost 2 months, so do you think it's getting worse? And yes, they were the same kind, brand etc. shoe.

[jensequitur]

>  but I also want a fair and true Doctor to handle everything correctly and keeps actively looking for a diagnosis and to not give up on me.

That's right!  You deserve a doctor who will look for what's wrong with you and fight for you.  I'm glad that the guys at NYU are doing that.

I don't know if you need an MS specialist or not, but it seems to me that general neurologists are like PCPs - they have a wide range of knowledge, but it's not very deep.  The average neurologist isn't up on the latest research or technology.

I dunno if this will help, but this is a neuro rating site...  Everybody rates their neuro in a forum-style posting.

http://www.msneuroratings.com/ratings.php

[dowma]

hey just read this post after replying to post after.  I too think its a good idea for you to sit back a bit and take this in so you can make decisions that are best for you.  I still believe that having the EEG certanly cant hurt but waiting a few weeks is a good idea too.  This all must be overwhelming so you need time for yourself and your family and have a little bit of down time.  Monotreme was right thats the neurologist I use no rushing though just some info i wanted to share with you.
take care
Mary Beth

[Sunnytoday]

Jen, thanks for the reply. I took it really hard when I read the LP results and MRI results and realized that I DID have lesions, DID have 2 O-bands and then got that e-mail that states "you have no damage" and I KNEW that something wasn't matching.

Right now I'm just trying to take it easy, and now that I made this decision to possibly go where they are either willing to look outside the box or reconsider MS I feel much more at peace inside and do not feel like crying all the time. I do not want the dx of MS, but I also want a fair and true Doctor to handle everything correctly and keeps actively looking for a diagnosis and to not give up on me. Quix has also been helping me to see this, along with my parents.

I'm going to take a few weeks to decide on the seizure monitoring, nothing needs to happen fast. I have an appt. for a dr. here in town, nothing lost to see him. I'm also looking at dr.'s in Tampa, and basically anywhere else that will assure me that I will be seen by someone who has experience with rarer or simply weird cases. i will look into that dr. in Texas. I know that I'm not the typical case of MS (and have been told i can't have MS becuase it'd to fast), so I probably don't not want to go for an MS specialist, perhaps a renowned neuro would serve the purpose better.

Anybody know a really good neurologist who just studies neurology, not specializes in things (I was looking and they all specialize, one is for snoring, one is for seizures, on is for HD.. and the list rolls on)

Thanks again!
~Sunnytoday~

[jensequitur]

Sunny, I understand that seizures happen with brain damage.  People with Alzheimer's have seizures too!  So do people with head injuries.  So there's something going on in your noggin.

With sensory and psychic simple partial seizures, the damage can be in the parietal, occipital, or temporal lobes.  (When it's psychic, you have this sense of approaching doom, or a strong sense of deja vu, or disorientation and depersonalization, just as a couple of examples.  Sensory includes buzzing and warmth sensations.)

http://www.emedicine.com/neuro/TOPIC342.HTM

But mostly the damage is hard to track down, and they're not really sure where the seizure happens in the brain.  Not like it would help any if they DID know...

My personal opinion is that you're on the right track too, but I think you should be following up on these seizures.  If the hospital in Alabama can do a 24-hour or 48-hour observation, preferably with a holter monitor attached to you, they can measure brain activity and see exactly what's going on in there.  At least they have you on Topomax to control the seizure activity, so you can get a rest.

I have heard very good things about Dr. Elliot Frohman, at the University of Texas Southwest in Dallas.  He's currently retired, but he has two good neurologists that are seeing patients on his team.  I can't help but think he would have some insight into your situation.

In my opinion, you have all the signs of somebody with Primary Progressive MS.  Typically there's little or no lesion formation in the brain - most of it is in the neck and thoracic spine.  I believe that Craig (monotreme) is PPMS, and he's fighting the same diagnostic battle.  I have a friend here in town who was finally diagnosed with MS after many years of symptoms, and he also has PPMS.  

It really disturbs me that people with this form of the disease have such a hard time getting diagnosed.  Because the clinical signs (o-banding, lesions) aren't there as with other forms of MS, then the people with PPMS remain undiagnosed, although they obviously have some sort of neurological damage.

Good luck!  Take a break, hang out with friends, do what you do to relax, and enjoy feeling good.

[monotreme]

Hi Sunny!!!  I believe the neuro Dowma sees is Dr. Najaar at NYU.  Look him up on the NYU website and search for the doctor name.  I think that is the correct spelling.  If not, let me know and I will look up my pm.

Elaine

ps...good job in making a rational decision.  I think you are on the right track to slow down and wait till 2009 to go back to NY city.

Elaine

[Sunnytoday]

Quix, to answer your question, they do not think it's a seizure disorder that's causing it, they think that is a side-effect of whatever this is. the only two phrases they could tell us when we asked them to give us any idea is "you've stumped us" and 'we have no idea"... Dr. K and H wouldn't even give us a general idea, they aren't going it any direction of any sort. It was Dr. S who wanted the seizure monitoring, and who actually said there was lesions on the white matter, problems in the grey matter, and autonomic dysfunction. i told that to Dr. K and he e-mailed back with "we have found no problems with your central nervous system". this did contradict what he was saying in the appt. when he was doing the exam.

so of course I'm confused with him.

did I answer all of your questions? You did a very good job of answering mine, and helped my muddled brain at least right itself into a train of thought and my mom actually agreed.

~Sunnytoday~