MS Specialist tomorrow....please pray

[luvnGod]

Hi All,

For those of you who pray, I am humbly asking for prayer.  I am amazingly not as nervous about this appt.as I thought I would be.  I have felt God leading me to simply come prepared and leave the rest to Him.  It has been such a struggle to simply let go and keep my focus on Him; where it belongs.  I know He doesn't want me to worry and the outcome will not change with or without worry.  I am praying that tomorrow will be a defining day for me and will provide me with much needed, long awaited answers, whatever they may be.  I am hopeful :)  

Love to you all!
Stacie

[luvnGod]

I wanted to share that I spoke with my dietician for Celiac and she says it doesn't add up.  Since I am on the GF diet and sticking it to it well, she doesn't think the neuro symptoms are from the Celiac at all.  She actually suggested it sounds more like MS.  Her sister and her uncle both have MS.

She also said, she's never come across anyone with Celiac with the symptoms I have.  I am working on getting my gastro doctor to write a statement to send.  He told me at my last appt, he did not think the neuro symptoms were related to Celiac.  

Again, one step at a time.  Love to all

[jensequitur]

I've had ON, and experienced the same weird color loss in my eye.  In fact, one was oddly gray, and the other was super-saturated.  Very strange!

Apparently it's normal to have more than one auto-immune disease.  I have vitiligo and MS, so there you go.

[Sidesteps]

Yay! Sounds like a keeper.

It sounds like you had ON at some point. I had eye pain that mimic'd ON but it never.went.away. The pain was from TN. I do have a lot of the ON symptoms but my latency is normal. My Neuro-Ophth indicated they could be a couple different things.

I'm starting to wonder if I should get a second opinion. I just read an article about treating with CiS. It's clear I had CiS and have lesions on my MRI.  Not sure what to do at the moment.  I need to sit and think on it a bit.

Anyhoo--- it sounds like your doctor might be a bit more assertive than mine. I am glad to hear that. :)

[luvnGod]

Yes, I am very happy with him.  He asked me to take a hot shower last night, and although I was afraid to stir things up, I did.  He asked me to look at something red and compare my eyes.  I did that and it appeared that the color to be faded in my left eye.  I also had a dark fuzzy shadow thing that covered portions of my left eye.  I felt miserable afterwards.  It was hard to move.  My left leg especially was stiff, heavy, weak with stinging pains.  Has been hard to walk all day and I feel SO fatigued. The fuzzy shadow faded a bit now, but my eye has hurt and felt weak all day.

I called the office a bit ago to let them know and he said that is what he expected.  Sidesteps, he is supposed to be sending information to my local neuro and asking him to do some more blood work.  He didn't really say much about the VEP numbers, just that the left was slow.  I have had the LP which was normal and lots of labs, so I'm not sure what he is going to order.  He talked about testing for Sjogren's but I have been tested for that.   I guess I will have to wait and see.

I feel very blessed to be in his care.  I hope we can get it all figured out by March, that would be wonderful.  March and April are going to be super busy for me, let's hope I can keep myself together.:)

Blessings
Stacie

[Sidesteps]

I am glad that he is open to possibilities. It is a good sign.

Did he say anything about your VEP latency numbers? Did he mention further tests? Did he opt to do any labs? I am sorry - I can't recall if you have had a LP and what labs you have completed this far?

Either way, it sounds like he is doing his due diligence. :)

[heartfelt77]

That is great news.  It's sounds like he is going the extra mile for you and that's what u need with a doctor.  I hope u get some rest and some answers soon.

Take care
     Misty

[Sumanadevii]

It seems he is willing to go the extra mile for you.  March is just round the corner.  Just maybe he will have a direction to go in for you.  I love a doctor that takes their time and is willing to do a bit of study before rushing conclusions.

I say, he is a keeper!

[luvnGod]

Hi All,

Thank you all so very much for your prayers and words of encouragement!  I can't tell you how much it means 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 some 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

[Sidesteps]

(((Stacie)))

I hope it went well. Please update us.

Take care,
~B

[tippy11]

Hi Stacie,

I also have an appt. with the neuro tomorrow. I'm nervous b/c I'm afraid that I will leave with still no answer.  I went to bible study yesterday and we studied 2 Thessalonians. The study was on faith and how we must place our faith in God in difficult situations.  If it's part of His plan for the work He wants to do in our life, He will definitely see us through it.  

God bless on tomorrow :o)

[Jacksmom516]

Stacie

My thoughts are with you today.  It was not long ago that I was where you are waiting for the answers, hoping for one outcome but resigned to the one that I thought I would hear.  I did hear that one and now at least have a game plan to fight this and move forward with this life I now have.

Let us know what happens and we are here.

(((hugs)))
Tracy

[heartfelt77]

Hello,  You have been through so much and done your job. Now its time for god to do is job.  I think you need to put your hand in his hand and know that he will guide and protect you in every way.  Just give it all to him.  Say god I have done everything I can please lift this situation from me..   Because, I know lord u will not steer me wrong.  With god loves u will get through.  He can get us through anything and everything.  I can honestly say if god feels its your time tomorrow to have those answers he will give them to you.....

Relax, and take a deep breathe, and say I've don't everything I can !

God bless,  I will be praying for you !!!!!!!!!   Never give up.  Even if tomorrow is not your day, it will come and there is a reason for everything. Remember, god has a plan for you.

Sending my hugs.....  Take care
    Misty

[Deb61]

I'll put you in my prayers tonight and tomorrow morning.  Let us know how your appointment went.