MS Specialist tomorrow....please pray

[luvnGod]

Hi All!

I have my first visit to a MS specialist in NC tomorrow.  I humbly ask for prayers for those of you who pray.  I am hopeful that answers will come.  I know God is taking care of me; my focus needs to remain on Him.

Love to all!!  I pray you are well!
Stacie

[luvnGod]

Thanks Sarah!  It has been very frustrating, but I do think I'm in the right place and getting closer to diagnosis.  I do think it will still be some time before official diagnosis though.  The way I understood it, is that he wants to have solid evidence with lesions, which I do not have right now.  And the VEP showed my left eye slow, but this last go around it was my right eye that was bothering me.

Thanks for writing and I pray you are well!
Blessings
Stacie

[sarahw244]

I'm glad to hear that you may be getting somewhere.  But it also irritates me to hear that they seem to want to throw all the eggs in the Celiac basket.  I hate when they do that!  Just because you have one disease or condition doesn't mean that is the root of all your problems and that you will never have anything else in your life because you already have one thing....

Okay sorry, I'm better now.  =)  It sounds like you are getting close to a dx.  Good luck to you!  
Sarah

[luvnGod]

Thanks so much for the responses!  Niko, I'm not sure about the HLA-DQ2 or HLA-DQ8, I think that is the genetic info right?  I had blood testing and biopsy.  Some issue resolved with the diet.  We had such a question about it, that the tests were redone and still came up positive for Celiac, so I feel that it is accurate.  I just don't feel that the neuro symptoms are from Celiac, especially after being on the diet so long.  I spoke with my dietician today and she agreed it did not sound like Celiac.  She actually has a sister and an uncle with MS and said it sounded like MS.

One step at a time, right?  I really pay attention to the things around me.  Angels are all around and I feel God's presence is never far from my side.   Thanks so much!!!  God bless you both and thank you for the prayers!!!!!
Stacie

[TheLightSeeker]

Hey Stacie,
Regarding your diagnosis for Celiac Disease, how was it done?
Do you have the details perhaps?
Were the diagnostic criteria similar to Dr. Fasano's (4 out of 5)
to confirm CD?

Here they are:

1)You have to have symptoms we know are related to celiac
disease.....

2)You have to have the autoantibodies we use for diagnosis (positive blood tests)

3)You have to have HLA-DQ2 and/or HLA-DQ8.

4)The biopsy shows damage.

5)Your symptoms have to resolve when you go on a gluten
free diet.

Maria gave me an "intuitive" prompt. "What came first the chicken or the egg?" I'll explain another time.

By the way I did pray and send energy your way!
I just forgot to "submit" my post! Works the same.
Gabriel is your Guardian Angel! Really!
He likes music. If you have classical or inspirational music,
try a CD on your stereo and pay attention!
Do not stress and worry. You're on the right path. Answers will come!
Blessings to all.
Niko

[MrsAristotle]

Hi Stacie, thats the problem as soon as these guys know there is another problem they focus back on that.

I think they are related celiac and MS. Its strange that in the MS recovery diet people are advised to avoid gluten etc.

I did find this not sure if it might help:

http://www.celiac.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/Multiple-Sclerosis-and-Celiac-Disease/

http://www.biomedcentral.com/1471-2377/11/31

Its a bit like what came first the chicken or the egg?

You could have had MS first then became celiac....or vice versa.

You say that the specialist said that in the early days sometimes the lesions dont show up, and this has been precisely what i have been telling people.

My uncle who is a radiologist has told me this.

PPMS will very rarely show up on scans, and the lesions are not the classic oval shape one would expect to see in the brain MRI. The oval shape lesions on the brain MRI when found are usually from classic RRMS and someone presenting very very classic MS symptoms.

MS unfortunately is an UNKNOWN disease, and can present itself in so many different ways.

I think your post is positive especially with showing a VEP exam with a slow eye.

At least this guy is taking you seriously.

hugs mariaxxx

[luvnGod]

Hi ladies!!

Thank you all so very much for your prayers and words of encouragement!  It means a lot to me!!

I feel a bit numb right now, with what happened today.  I really liked the specialist and felt it was worth the drive.  He didn't ask to see any of the records from my neuro up front, he did his own exam and asked important questions.  He said with confidence it really struck him as MS.  As we looked at the MRI's, he pointed to an area on the brain MRI that he said looked suspicious and in the right place for MS, but it was hard to tell.  He said it's not uncommon for lesions not to show in the beginning stages and he offered that is what he felt it could be.  

He said it seems that I've had several CIS episodes that could prove to be "early" MS.  He said it is possible to diagnose based upon the past history, however he felt it would be better to have something solid show.  

THEN....we talked about more blood work and Celiac was brought up.  I told him I have been diagnosed with Celiac since 2009.  Things started changing.  He said it is possible that my symptoms could be coming from the Celiac.  I told him how the other neuro thought about that too, but that it didn't make sense to me b/c I have been on the gluten free diet since 2009 and have no stomach issues, which was my problem.  Why after being on the diet would I be getting worse and it maifesting as ONLY neuro symptoms...doesn't add up.  

As I was walking out he asked me to do a quick VEP.  The results came back that my left eye was slower than the right.  BUT, I had told him that my right eye had been bothering me lately, so he was a bit confused by this.  I have eye pains inboth eyes, but never at the same time and not on a regular basis.

I go back in March and in the mean time he is helping me treat the symptoms and researching the Celiac and neuro symptoms a bit more.  SO not all bad, just don't want everything to keep falling under this "Celiac umbrella" when in my heart I don't believe it is causing these things.

Feeback, thoughts?  Anyone have Celiac and MS?  He did say it was possible to have both.  UGH.   Good visit, but I'm so tired in every way.

Love to all!  Thanks again for your much needed prayers....I felt them today.

Stacie
.

[sarahw244]

Good luck today!  Said some prayers last night and will again today.  
Hope to hear it was good.
Thinking of you...
Sarah

[MrsAristotle]

I am praying as hard as I can that you get some answers today.

Please let us know how you get on.

Take a deep breath, (but dont forget to breath lol), and just tell him how it is.

Good luck and thinking of you. xxxxx Mariax

[sarahw244]

Good luck to you tomorrow!  I will be praying!  Let us know how the appt goes!  =)
Sarah