UPdate from neuro appt yesterday. ??????????

[luvnGod]

Okay wanted to give an update and see what you all think.  I met with my neuro today and he did go over the LP results with me.  He said everything can back fine, but was concerned about the technician hitting a nerve root.  It has given me some issues lately.  Anyway, I do know they didn't take a beginning and ending pressure.  He said given the fact that my MRIs have been clear and there were no O bands he doesn't believe I have MS.  He still is honoring me with a referral to a MS specialist and I have been scheduled for Jan. 25th.  I picked up copies today of my MRI's, but strangely enough the only tests listed are w/o contrast and I know I had them with contrast as well.  I am going to investigate this tomorrow!

I asked him if I had been tested for all MS mimics and he sais all that fit the symptoms I've been having.  I asked again about Sjogrens since my eyes read a 0 and 2 for moisture and my mouth is dry....he said my SSA and SSB had come back neg in past, but he couldn't be absolutely positive I didn't have it.  He is suggesting all of my symptoms are coming from my Celiac Disease.  I see where he is at a loss given tests are coming back negative, and that is the one thing that has been confirmed....BUT I have been on the Gluten free diet for 2 1/2 years,and am doing well, why would these neuro symptoms begin plaguing me and getting worse, when as far as Celiac goes, I'm well.  Even my gastro doctor didn't think the neuro symptoms were from Celiac.

My neuro is great, I really think he wants to help, I just think he is at a loss.  I am too....let's see what the MS specialist says on the 25th.  Any thoughts or words to share?  I sure could use it right now.

Blessings
Stacie
.

[luvnGod]

Thanks gals!  I will look into the copper deficiency...I'm wondering if that would've showed in blood tests or if it's a specific test?  

I have heard so many good things about the MS specialist I'm going to.  I'm excited but very nervous to see him.  I guess, as I've said before, it's the fear of realizing I may not have MS and then what?  I should be relieved, but I can tell you, I will be broken...I will feel like I'm starting all over....still no answers.  One step at a time :)

Thanks for the continued support....I will keep you all updated!
Many blessings to you all!
Stacie

[Sumanadevii]

Pssssssst...Stacie, I do not think it is Celiac Disease causing the problem either.. I definitely think the problem is neurological.  We may all be in for a surprise if the MS specialist by exam alone thinks it is MS.  Stranger things have happened.

My last piece of advice, if the doctor cannot give you a dx that you feel matches your symptoms....on to the next.  Trust yourself enough to know your own body and don't allow them to give a bs answer...You know like the bs answer I got "It's a pinched nerve".  You are smarter than that!!!

Keep us updated even if you go to the other board.

[teenyturner]

Hi Stacie,   Have you Googled copper deficiency? It gives the same symptoms as SCD but tends not to be reversible unless caught very early. It does however, show up on MRI as increased signal ( but not 100% of the time ).

Regards

[luvnGod]

Thank you so much.  I really admire my neuro and think he is a great man.  Although he believes I do not have MS, he is honoring my wishes by allowing me to go.  It's been in my heart so long that I have MS, it's hard when you have to come to that realization that it is something else.  BUT, it should be a joyful realization and I should be so very thankful that it is not.  I think once I visit the specialist, if I hear it from him, I can lay it to rest.  Still, I pray there is direction from there.  

I truly do not believe the Celiac Disease is causing all these symptoms, but I know something is so the search continues.  

Lu I just found the limboland group the other day and posted. :)  Thank you.

Blessings to you both!!
Stacie

[Lulu54]

Stacie,
How fortunate that that this doctor is willing to cross all the T's and dot those I's with the tests and referrals. When you get through with the MS neuro, then you can plot your next step.

Unfortunately there are a lot of people with  neurological problems who live a long time day-to-day waiting for something significant to happen that will finally provide the answer.  Being in limbo is such an emotional and physically difficult place to live -

Do you know there is a Limbo group here on MS?  You might want to wander through there and bounce your symptoms off of them and see if they have some suggestions - you can join their group and I see Mrs. A. has just posted a bit about this group.  You can read her thread at

http://www.medhelp.org/posts/Multiple-Sclerosis/Limbolander-Forum/show/1660180

good luck with this next step,
Lulu

[Sumanadevii]

I think your present neuro is a very bright man.  Any doctor that isn't afraid to have another look over his shoulder is worth his weight in gold.  

Personally, I think it is beginning to sound like you do not have MS.  If after visiting the specialist does your present neuro have any direction for you to go?  I would be sure to ask him.  Surely something is causing the symptoms you describe.

Best of luck with the MS specialist.