Calling Deb Of Long Island

[MyMississippi]

Hi Deb,

I see that you have had an MRI of the brain ( I am going for one on Wed ) and also you mention your neuro doctor. Are you seeing the neuro for your neuropathy ?What did he say caused it ??? Celiac disease??? Does he think you will get better in time, or just have to live with the problems.

I would be interested in knowing just which neuro symptoms you are/were having that warranted an MRI..

Thanks so much,

I'm just trying to gain insight into these weird things

[darlindeb25]

I'm answering your page!!!! Yes, I am seeing my neurologist for my neuropathy, and yes, he does feel vitamin and mineral deficiencies probably caused it. He can't tell me it will get better, but we have decided I have slowed the progression, maybe stopped it. I have been gluten free for 8 yrs, so a reversile is probably out of the question by now. I do take 3000 mcg of B12, 3 x's a week, and have taken B12 now for over 3 yrs, which I do feel helps considerably.

My neuro is the doctor who finally ordered a celiac panel and found me to have double DQ1 genes, which is double trouble, no matter how you look at it.

They did the MRI to make sure there were no other autoimmune issues. I have the buzzing in my feet, cell phone vibrations, cold spots, numbness, and balance problems. I have small fiber neuropathy in my legs and feet, and they never really gave me a name for my arms and hands, but have it there too. I can say symptoms have relaxed somewhat, and I wonder if it isn't from the B12. I also had to have a sleep study done, which I will be following up on as soon as they call me.

The cervical MRI found 2 slightly herniated disc, which I do have neck pain too. As my mom always says, sometimes I feel like a mel of a hess!!!

I hope I answered your questions, if not, ask away!!!!

[MyMississippi]

Thanks for your response Deb !

What is cell phone vibrations??

And did you ever have facial numbness and tingling ? Muscle twitching in various parts of your body ? Days of great fatigue ?? THen everything goes away and you feel almost "normal" for a while...... (except for the tingling- that never goes away for me )

As I write this down, I realize I am a textbook case for MS ----

Hope you don't mind all these questions----

[darlindeb25]

You are a text book case for neuropathy too. Cell phone vibrations is just like it sounds, I get the feeling on the bottom of my feet that I am standing on a cell phone that is set to vibrate!!! I swear my foot is ringing!!

And did you ever have facial numbness and tingling ? Muscle twitching in various parts of your body ? Days of great fatigue ?? THen everything goes away and you feel almost "normal" for a while...... (except for the tingling- that never goes away for me )

[MyMississippi]

Well, thanks Deb------ I am hoping all these symptoms are just neuropathy from possible Celiac. However, the facial numbness and tingling is a classic symptom of MS.

However, in my research of Fibromyalgia, many of those patients suffer from the same exact neuropathy as you and I have. But their MRIs are clear. Some say their doctors tell them, they will eventually have MS and it will show up later on the MRI. Or that they already have a mild form of MS.

It's all quite confusing, but the diseases of the immune system are tough to diagnose and treat, as I understand it.

If my MRI is clear, I will certainly look into B12 support. But my B12 levels were not low----- so go figure ! !

Hope your foot stops vibrating ! ! You are so funny !

Have a blessed day !

[darlindeb25]

Thank you CeeCee, making other people smile is always a good thing!!!

However, in my research of Fibromyalgia, many of those patients suffer from the same exact neuropathy as you and I have. But their MRIs are clear. Some say their doctors tell them, they will eventually have MS and it will show up later on the MRI. Or that they already have a mild form of MS.

The neuro I have now, specializes in MS. The first neuro (in the same office) told me there are no signs of MS in my MRI, and he never mentioned it further. My neuro now, Dr. G. has not mentioned MS to me either. My mom has fibromyalgia, she also has a DQ1 gene, but has never gone completely gluten free. My dad is gluten free, so at home, they always eat gluten free. They do go to Senior Dinners though, and she doesn't worry about gluten then. I often wonder if total gluten free would help her fibromyalgia. At this point in time, I am not going to worry about MS, I actually do not think it is part of my future.

Also, remember, B12 levels that are "normal" to a doctor, may be way too low for someone with neuropathy. As I have said, I took 1000mcg of B12 and my level was at 1237, now, I am taking 3000mcg and my level is 1012...why is it lower now, I don't understand. I do know, many people with neuropathy have good results with B12, so I am sticking with it.

YOu have a good day, and good luck with your MRI tomorrow.

[MyMississippi]

Dear Deb,

I did not intend to imply that YOU may have MS----- and I hope you didn't take it that way------Your neuro MD is infinitely smarter than I am --------- for sure !

I'm just hoping my symptoms are Fibromyalgia and not MS ----

My doctor wants to rule out MS before we pursue the Fibro dx and so do I.

Anyway, as a philospher once said " It is what it is "------------- And I will have to deal with it

I'm hoping this tropical storm Fay does not interfere with my MRI tomorrow---- so far, just a little wind , but hasn't gotten here yet.

I like storms ------ (yeah, I'm weird like that -- ) ------- as long as they don't cause damage and hurt people--

Take care, and thanks so much for your input-----( it's nice to talk to someone who has the backing of a good neuro doctor )

[darlindeb25]

I did not intend to imply that YOU may have MS----- and I hope you didn't take it that way------Your neuro MD is infinitely smarter than I am --------- for sure !

Nope, I didnt think that, I was trying to relieve your mind!!! Their first thoughts are MS, and personally, I don't think they need to worry us by saying that's what they are looking for, tell us after the fact, saves on worry time!!

I love storms too, not hurricanes, but thunderstorms. Love to watch them, always have since I was little.

Good luck tomorrow!!!