Back from Neuro appt.....

[tonyad]

Just an update.
A quick re-cap;
- Have had MRI's and all showed lessions in brain. None showed on C-spine.
- All blood work ruled out other mimics/possibilities of other diseases
- Recent MRI's (using MS protocal) showed brain lesions and NOW lesion in C-Spine
- Neuro called last week telling me I need to come in first of week (today) to discuss results as there is
  a new plaque noted on C Spine and we need to discuss options.

TODAY;
- Doctor D (this stands for Dr Do Nothing Cause I am so confused and don't know what to do!)
Anyhow, Dr. D comes in and talks about the recent MRI and says....OK Get This......
  " I want to do another MRI, a VEP, and a LP".  Then he goes on to tell me..."Now, if the LP and/or VEP come back negative that still DOES NOT mean that you do not have MS". ( Uhh, so why are we doing them?)
   I inform him that the VEP would be a nice diagnostic tool for me if I ever had optic- neuritis in which I have not!
  He said that he is so afraid to give me the title of MS BECAUSE of me having a dx of Sarcoidosis although he knows that is what we are dealing with.  
That damn Sarcoid!  So, if I did not have Sarcoid I would have a definitive dx?......YEP!
This is the 3rd Neuro that has been "Afraid"..."Scared"...whatever the word is they want to use, to wrap all of this up w/ a firm dx. Let me say that Dr D. also stated that in his professional opinion that this did not even look like the sarcoid acting up. Also let me remind everyone that I was dx w/ Sarcoid over like...13 years ago and have not had to be treated for it. Please DO nOT get me wrong, I DO NOT in any way, shape, or form want a dx of MS!  
   With that being said...if it walks like a duck, Talks like a duck, Then, guess what???  It's a Duck!!

  I am at a total loss!  Every test they have me do turns out the way they want it to to get a dx and with each MRI it shows new plaques and now even out side the brain into the spine.  
  Well that sums up "My Day at The Neuro w/ Dr. D"
   I could possibly see these doctors being a little slow for dx if my MRI's showed nothing, My blood work showed some kind of flag for something else, or I have not had a hx of relapses (even hospitalized and put on IV steroids for an issue I had w/ my legs not co-operating :)  
   Thanks to all for listening and w/ thoughts,
~Tonya

[Corvin]

Speaking of "ace in the hole", that's what they measure in the CSF, from doing a LP, to diagnose Neurosarcoidosis, is the level of Angiotensin Converting Enzyme (ACE). Well and biopsy, but that's usually not possible when the granuloma's are in the CNS.

I have Sarcoidosis also, and am thinking of getting another LP, and measuring the ACE to see if it's in my CNS. I've had a LP before but they never checked the ACE that time.

I know my sarc relapses-remitts almost just like MS. But as of last year anyway I don't have any lesions, so maybe it's not relevant.

          http://www.labtestsonline.org/understanding/analytes/ace/glance.html

[sllowe]

Hi Tonyad,

You've gotten such good advice.  Just wanted to say hello and encourage you to continue the fight as you are.

You know, Quix mentions to get a 2nd of the Sarcoid, and I think that is your ace in the hole right now.

I hope the re-do of tests helps the current neuro with clarity, but I hope and pray you get a more definitive answer.  Especially because you are acquiring more lesions.

[tonyad]

First off, Again Thank You with all my heart for taking the time to read my post.
Quix, Oh yes, withouta doubt, I am going to do the test. I did have a VEP in the past and it was ok. But, I will have it repeated.
Also, I will have the LP..Looking foreward to it :)...NOT!  But hey, whatever makes Dr D happy then I too want to share in his happiness?


Lala, Jan and Alex,
Thanks for the nice words. I am getting pretty good at quacking. In fact I feel myself waddling every now and then ;)

Lulu;
Yes, I am on Inspire.  Shoot me a message next time you are on so that I can get your forum name. (If you want)
Actually, I do not have neuro-sarcoid. This is something they were toying around with (2) MRI's ago. It was dx through lymph node biopsy. Not in lungs either.  Maybe it is in the muscles though and that is what is making my legs so weak???   I am always open to other possibilities.

I will once again, jump through hoops for dear Dr D....this WILL be the last time though.....I will go out of state after this. Perhaps Washington State. I hear there are a couple good docs there.
  I am just very concerned about my leg weakness.  I am not able to do any long time walking (mall, Target, treadmill) you get the picture.
Take care friends,
~T

[Lulu54]

Hi T,
Have you talked to the fine folks over at the sarc forum about this?  I think I recognize you from Inspire, am I remembering correctly?  This is just nonsense from your neuros.  

Ask them why they think you can only have one disease in your body at a time.  We are constantly reminding everyone here to stay open to that possibility, maybe the docs need to be told too.

How long have you have neurosarc?  

Let me just honestly tell you how sorry I am that you have either and or both of these cra ppy diseases.

as always,
Lulu  

[BOK2Bjan]

Oh how surreal some visits to the Dr can be!  Although my dx of MS was quick when I finally got it - behind the scenes, I had a similar thing going on that you have now.  Because I already had the dx of Sys Sclerosis, my dr kept trying to say (to himself) that my MRI results, which showed new lesions each time, were "insignificant" "some MRI debris".  My MRIs were showing lesions at least as far back as 04.  It wasn't until this past November that a neuro reading my MRI told my PCP that I should have additional tests.  So, the LP, VEP, etc.  I had the "slam dunk diagnosis", but was totally shocked to hear it.  I hadn't been told it was ever a possibility.  Every neurological complaint had been met with "gee, do you know of any neuro symptoms with Sclerodema?  Have you run across any of that in your forums?"  I think we all have to assume that doctors can't be up on everything anymore.  It has made me quite an advocate for my own care.  In many ways, I guess I'm thankful that I didn't have to go through the wait and see process.  But I did go through that with the SSc., so I know it is hard. I feel for you and hope you get answers soon.

Blessings, Jan

[Quixotic1]

No, I just looked it up and it is not so grave.  I think you would be an excellent candidate for one of the NIH studies, maybe even the one Julie participated in.  With the number of lesions continuing to grow this is something that has to be resolved.

You need a medical referee!

Quix

[Quixotic1]

Tonya, this must be beyond frustrating for you.

I think you need to look at the opposite view of the VEP and LP.  If they are positive it is evidence toward MS.

As for the VEP, it is quite possible to have an abnormal VEP without ever knowing that you had optic neuritis.  My OCT test proved that I have had significant ON, but I don't really think I ever had symptoms.  Nontheless I have atrophy of the left optic nerve - proof positive of the history of ON.

I will try to see if I can find an expert in Neurosarcoid where you might get a second opinion.  My understanding is that Neurosarcoid is a very severe disease and those people are very, very ill and rapidly get worse.

Quix

[HVAC]

Tonya
I feel your frustration.

It took me two years, 3 Neuro's ,3 abnormal MRI's and an abnormal VEP with no Optic Neuritis and finally a really abnormal LP to get my diagnosis of MS. At the last minute I tested false positive for Lupus and the Neurologist halted my diagnosis of MS with the insurance company then changed it back to MS a day later.

Unfortunately for many people MS is not a slam dunk diagnosis.

Alex

[lala47]

I don't kow why it is so hard for these Doc's to give a dx, from what I have read on this forum they can snach it away as quick as they can give it.  It seems to me since you now have lesions on your spine and harsh symptoms that you need to be on DMD.  Sorry for all that you are going through and you are not alone.  So just keeping QUACKING for a dx.

lala47