On my trip, life, me, and ???'s for all of you!!

[Sunnytoday]

  First, let me thank each of you for your support. I know when I click and post, I often don’t realize that there is another person on the other end, waiting for the reply. And, I realized in NY, just how much that support can mean.

               Visit to Dr. K & Dr. H with the MS center at NYU.
As Elaine has said, basically, they went over everything done so far, threw a lot of diseases at me in quick fashion, and said that I had patchy areas on my MRI’s and that I had 2 O-bands in my LP, but that my Evoked potentials were totally 100% fine and that since it was moving so fast it couldn’t be MS quote “we see 10,000 pt.’s and none are like you” and “ you have us stumped”. So they wanted me to see head neuro at NYU. That didn’t go through, and they shipped me off to the genetics dr. later, on Wed. after my MRI (after we reschedule our flights)

             Visit to Dr. S with the Genetics Dept.
Dr. S took almost 2 hours with us and looked at everything and said that I had lesions in the white matter of my brain, trouble in the grey matter of my brain due to the seizures (complex partial seizures) and my autonomic system. She said that she can’t pinoint where this is originating from… AND, she couldn’t give me a name. After hearing what it wasn’t (thank goodness, as most of those genetic diseases are killer’s) MS sounded nice and safe (you aren't offended, are you?). :)

They all drew blood (twice) and they did MRI’s of the spine (of which results I do not know).
-------------------------------------------
The MRI of the brain results say
“there is a small punctate focus of FLAIR hyperintensity within the left cerebellar hemisphere and vague FLAIR hyperintensity within the left mesial occipital lobe and bilateral posterial parietal periventricular regions. RCBV values of up to 1.0 are noted in the areas of questionable signal abnormality….  There is evidence for a skull base or calvarial lesion.”

And the LP had 2 O-bands and high protein.

----- to be continue in a sec.

[Rena705]

My little Sunshine...I am soooo sorry to hear of all that you have been through and that even after all that urgency they haven't figured out what your ailment is!!  I have been thinking of you honey and I guess you are going to have to wait yet again...that seems to be a full time job for most of us doesn't it?  I am sorry that I don't have much to offer other than my good wishes right now..dealing with a little bit of not so nice stuff myself but hopefully I will shake this black cloud over my head in the next few days and will be able to offer a little more support.  Just please know that my thoughts are with you and I wish that there were something that I could do to make all of this let down for you a little easier to take.

Lots of Hugs,
Rena

[doni54]

I am so sorry that you haven't gotten a dx, cause I know how much you were looking forward to this trip and coming home with a dx and treatment plan.

Hang in there, and listen to Quix, things are going to work out.  I'm praying really hard for you to find an answer, quickly.

Hugs
doni

[AMO]

dear sunny,

i have  so much i want too say, and when i can geet  wriitten.
I   am sorry this has   been like this for you.
I relate VERY     veyr much,\
but i am much oldeer and even then has been diifficult.

I remeber so     well tlhe      ergenncy. It had me scared.
It   is very hard when it is youu  going thoruhg this  and while  such rellef , still no answer and    then seeming     dropped by the onnes who 'made you ' go through all thiswhen they  who are   suppose to figure     it out and mmake  you better.
Yoiu are the one left dealing the illness.
it isn't easy . it can be      so draining.
but keep faith!!  
amo

[sllowe]

S-Bunny,

I'm sorry you don't feel further along with what is going on, but want you to know I'm thinking of you and sending some peace your way and hoping that the Drs continue to work hard on your behalf to find out what this "isn't" so you get closer to knowing what this really is so you can begin therapy to treat this beast.

Wrapping supportive and patient hugs gently around you!
-Shell

[Sunnytoday]

to all- thanks for the encouragement- I needed that!

To Quix- thanks! I think what made me SO down whas the fact that the e-mail seemed to brush aside my MRI results (lesions), the LP (positive), and the obvious neuro exam and simply say "your ok"... but I'm going to hang on to the fact that they will keep looking.

I suppose it's hard when everyone in NY keeps repeating "it's sooooo fast" and then sends you home? I'm like, yeah, so do something, you have a few tests that prove I'm not crazy!!  

The reason they went a bit nuts over the genetic thing was my pyruvate was high, the lactate normal. So they drew more blood. But all other genetic disease I wasn't a ringer for becuase, as the genetic doc. said "this is too fast" and "I can't localize the problem to one spot". Why must it be localized?

If my Evoked Potentials were fine, why can't I pick up my feet? It's really frustrating me, but I'm trying to let that go and just accept that's how it's going to be now.

I'm going to leave all this behind for a few months... and just focus on living life and not on whatever I've got, and hopefully things won't get much worse. I will of course, pop in here from time to time. (hmmm.... how long will that last, huh?) A newer symptoms is a shake in my hands, so when I try to eat my hands shake and I spill food off my spoon so that's REALLY hard to adjust to, so every time I watch my hand come to my mouth with food, it's reminding me of this 'whatever' so I've got to accept that weird symptom too this week. not happy about that either. How do you guys handle this type of thing? I will get over it, of course, but it bother me and eating soup and cereal is really hard!!! And yes, it was shaking in the neuro exam, and that hand to nose- hand to finger neuro test was terrible, I've always thought it was easy until now, I flunked almost every test!


I hope to get a part time job, etc. if that is possible with all this 'stuff' happening, I just don't know but I'm going to reach down and grab some of that determination that has brought me this far and try to keep going.

Talk to you and the rest of the gang later.
~Sunnytoday~

[Sarahsmom46]

Doc Quix made a very good point and there's a good possibility that your problems, neurological, could be more in the gray matter than in the white matter.  The neurologist that I saw last week at the MS clinic here said exactly the same thing.  He told me that even though my white matter lesions are not really able to explain my walking problems, that he suspected that the lesions that were probably causing the problems were in the gray matter. And like Quix said, we just don't quite have the technology to image the gray matter, but they are working on it.

A few weeks ago one of our forum members gave a web address for a protocol that the NIH is doing on people who are possible for MS.  I called and spoke with the person who does the screening and put my name on the list as interested.  What they do is bring you in for 3 serial MRIs and lots of blood work and keep an eye on you.  As you condition progresses and new issues come up, then you may be diverted into another protocol or trial that is appropriate for you.  The protocol is being done by the Institute of Neurological Diseases.  Now, we all have heard about what happened with Craig and the NIH, which was beyond horrible, but it is still an option if you want to consider it.  You are such a rare case and I can imagine that the NIH would be interested and excited in studying you.  

I hope you are feeling better today.  Take each day as you usually do, one step at a time and with great purpose.  Trust that you'll get your answers.

Lots of hugs,

Julie

P.S.  I can't wait to see your pictures from the trip.  Don't you love NYC!!!

[hbananas]

Thank heavens for our Momma Bear, huh?  I am so very sorry you're having new or worsening symptoms, but I rejoice with you that they're ruling out the deadlies.  It sounds like these guys aren't going to give up until they get to the bottom of this.  Maybe we'll see you on TLC or Discovery one of these days.  Or a special from the ever-adorable Dr. Sanjay Gupta on CNN?  Of course, that will be after their triumphant diagnosis and treatment.  You're in my prayers.
Holly

[Quixotic1]

Well, what a picture you paint!  I t does look totally contradictory to you to be rushed back and forth and then be given this reassuring note.  As a physician I can see how this would develop.  First, there was this unnerving worry on their part that you might have one of those really bad metabolic or genetic diseases.  After the last post when when you told us about that possibility, I was really stricken with worry that I couldn't share here.

Finally, They could put a lot of the data they had together to see that you were not showing signs of severe damage that they see in the worst diseases.  Good.  That is what they were conveying to you.  On your end you are seeing this horrible deterioration in symptoms so the difference between what you are feeling and the way they were acting compared with this new reassurance seemed totally weird.

My gut feeling is still that this is MS - and no we aren't offended that you called our disease a sissy - and that it is just really progressing fast.  I know that they should know better, but MS can progress so slowly as to be called benign and the literature says that a small percentage can progress faster.  The trouble with what I just said is that I have no experience to back this up.  It's just a feeling.

Modern medicine is still confounded by the variety of ways the human being can find to show disease.  And you are showing some things that are much more rare in MS - like the autonomic problems (gastroparesis, the heart arrhythmia), the gray matter, and of course the white matter that look like MS.  Data is emerging that MS involves extensive lesion in the gray matter.  They are currently developing better ways to image the gray matter with different MRI techniques and higher MRI resolution machines.

Try not to be down.  You have several members of an international reknowned medical center working hard on your case.  This is still all good.

It seems like this forum is collecting some of the weirdest cases in the world.  We may yet "become" House, lol.

See you in the morning, hun.

Momma Bear

[Janette2836]

I am not very good with words but I am sending you hugs!

Janette

[Lulu54]

Welcome home dear, I know I speak for everyone here when I write that it is disappointing that you came home again with no answers.  I have little to say - all of this leaves me speechless about the inability of modern medicine to get dx's finished ...

Go get some sleep and check in when you are rested - I'm sure you will find lots of responses here in the morning.  

Hugs to you, Lulu

[Sunnytoday]

I’m having trouble dealing with all of this, especially the lack of “go-from-here” and “coping-mechanisms” they have been offering. They set up a appt. in 2 months, but will wait until then to offer any seizure medications, although they do believe that  I am having seizures.  They haven’t done anything more about the walking issue, and as it’s getting worse, I guess it’s just weighing on my mind right now, as it’s important to me to be able to walk… and just watching it leave is scary. Yes?


They are just waiting….So, I e-mailed Dr. K to ask for help to handle this, and told him that this was bothering me and he said.
“an important message that i would like to relay to you is that all our investigations thus far have not uncovered any evidenence of
damage in the nervous system. This is VERY GOOD news. The MRIs have
either been normal or nearly normal (including the special perfusion
studies), evoked potentials, importantly, were 100% normal. All this
is very encouraging. We are usually pretty good at diagnosising 'bad
diseases' and whatever you have, it does NOT look at this point that
you have a dangerous or life-threatening condition. We will keep
trying to figure out what you have, but I would like you to know that
tests so far have been quite reassuring”

WHAT?????????????? YOU ARE THE ONE who was in the big hurry three days ago... now why the sudden change in the e-mail? When I just got in that message I almost cried again, which I have been doing a lot of lately which is very unusual for me. I have been given the news this week that my body is not normal, shipped to different doctors, and then told this?

I will just have to be honest with all of you how rough this is, as you are my place of support.


NOW… on to life… I am having new symptoms, they never stop for anything. Of which, I’m not that happy. For example: My feet are getting worse, I basically drag them around. I wore out my last pair of shoes in 2 months, and I bought a new pair and they only lasted 7 days (they have holes in both soles in the front- wore them right through from dragging my feet because I can’t pick them up not matter how I try). And, my short term memory is getting worse. These two are the more bothersome of my newer symptoms, other's are just new and to be handled.

I was going to ask all sorts of educated questions about what I have, but right now, I'm tired, upset and just was to cry all over you.... this has all be very draining.


I do want to say that my trip to NY was also fun, we took two days in-between the Dr.’s visits to bop around town and just view NY.  When I am in a more sunny frame of mind I will post pictures and tell you of all the fun I had!!

~Sunnytoday~