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Dandelion

What Happens At A Neurolgist?

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I freely admit that going to a doctor's office fills me with anxiety. The waiting room full of sick people, the needles, the testing, the smell (they all seem to have the same weird smell) - it's panic attack city for me. I will also admit that my husband accompanies me to a majority of my doctor appointments to make sure I actually go. I getting panicky just typing this.

So, with that background in mind, could someone tell me what happens at a visit to the neurologist? I'd rather have the whole truth. It makes me feel better to know what's going to happen. Will I have to get an MRI? That thought scares the hell out of me. The numbness in my fingers and feet is starting to get more and more noticeable and I guess it's time to have it checked out. It's starting to bother me while driving. Does anyone else have that problem? I'm ok with a quick drive, but on a longer one even my leg will start to feel a little numb.


Beth

Gluten free since January 2007.

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They'll probably just ask your symptoms, check reflexes, ask a lot of questions. Any tests would be scheduled for later. Why does an MRI scare you? It is painless.

Hi Nancy,

The MRI fear is completely irrational. I'm claustrophobic. I don't think I could handle being in that little tube.

Beth


Beth

Gluten free since January 2007.

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Will I have to get an MRI? That thought scares the hell out of me.

If you have to get an MRI they can sedate you or give you something for anxiety. I think the claustrophobic aspect of the MRI gets to a lot of people so I think they usually give you the option of taking something for anxiety before the procedure.

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Hey there!

When i went to the neurologist he talked w me and litened to my symptoms, then formed a plan.

I did have to have an MRI. I kept my eyes closed the whole time and they gave me ear phones to listen to music. Alex, is right, they can give u anxiety medication. just make sure it is gluten free. But u can research that ahead of time.

I used to have numbness in my feet and hands often prior to the gluten-free diet. It has become almost non existent for me since going gluten-free. But i still have some trouble w feeling in my palms.

Good luck!

-Ali :)


-Ali :)

1/07 Gluten free after being severely ill and fatigued for a straight year and GI issues since teenager.

2/07 Negative blood work but phenomenal results on gluten-free diet.

2/14/07 Found to be critically deficient in vitamin D.

10/27/07 Dairy free due to being sick last two months.

10/28/07 Son, 9 yrs old, began elimination diet due to tummy issues and behavior issues.

Also dx with Fibromyalgia but not 100% sure i have it anymore now that I am on gluten free diet. Could have been Celiac all along!

Gluten free is the way to be! I feel soooo much better!

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Don't they offer open MRI's now? Where you're not inside the tube?

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Don't they offer open MRI's now? Where you're not inside the tube?

They do, but I thought most insurance companies wouldn't cover them. Maybe I'm wrong? That would be good. I'm hoping I won't even need one. :)


Beth

Gluten free since January 2007.

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To my knowledge, the cost is the same and they have them nearly everywhere now. I can't say what a closed MRI is like because I have never had one, an open one is hardly what I call open, even though you are not inside of anything, but if I can do it, I am sure you can. I had a brain MRI then in 2 weeks, I had a cervical MRI and honest, you will be ok. ;)

The neurologist also may take a paperclip or a safety pin and poke the ends of your fingers and toes, not breaking the skin, just to see how much feeling you have, it tingles, I won't lie, but it's how they have to test your nerve endings. They also have this bar that vibrates and they hit it on a surface and then touch it on you to see how well you feel it, doesnt hurt at all.

He will probably also order an EMG, you may have already had a doppler test done.

Neuropathy isn't fun and don't give up if you do not get the answers you need the first time. My neurologist seemed so off the wall the first visit and he seemed to be doubting everything I was saying. He even seemed to be telling me he didn't think I have celiac disease. I finally said, "Well, whether I am a celiac or not is not the question here, I have been gluten free for 7 years and will be for the rest of my life, I am having these strange sensations and lets find out why!" We went from there. He ordered all these tests I mentioned, plus a hearing test because I also have tinnitus (ringing in my ears).

When all the tests were done, he told me I have peripheral neuropathy in my hands and wrists, that I have a herniated disc at C5-6, and very little hearing loss. So, for my hands, he ordered splints (which I haven't gotten yet, I've had them before and they don't help much), for my neck and shoulders he has ordered physical therapy, he has put me on 100mgs of Topamax for my headaches and sent me to an ENT for my tinnitus. After all this, I said to him, "OK, I agree, I have PN in my wrists, but can you explain to me what is going on with the rest of my body, why do I have the tingling, the vibrations, the buzzing, the cold spots, drop foot, etc?" He says, "Well, I'm sure you have small fiber neuropathy too, we just do not have the proper tests to diagnose that for now." I just smiled and said, "Was that so hard to admit?" From that point on, he and I have gotten along very well. I see him again in January, if the Topamax is not helping by then, we will try a new med.

Good luck and email me if you have any other questions. OK?


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Thank you to everyone for your support and wisdom. So I'm guessing there will be a needle involved in this in some sort of way? :( Crap. I hate needles even more.


Beth

Gluten free since January 2007.

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They also have seated MRI machines, too. You sit there and there's a wall on either side of you, but it stops even with the front of your body so you can see out and aren't in an enclosed space. They're not very common yet, but you could ask about it.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Ok Dandlelion--yes, there is a needle test too, but the least you know, the better. It's not bad, but I find if I do not know what to expect with most tests, then I am more relaxed then if someone told me before hand.

When I had my hysterectomy, I was given a website to read in before hand. It's called hystersisters and it is a very informative site, but as I was reading, I realized it was scaring me, so I stopped reading. After my hysterectomy, I went back to the forum and have learned so much, but I was better off not knowing it all before hand.

You will be fine. The tests are nothing you cannot handle. Probably your husband can be with you during most tests, but not during the MRI, no one is allowed in the room then. Your doctor will give you valium or something to take before hand if you think you need it. They also give you a button to push if you panic and need it stopped, I had it in my hand the whole time, but I never used it. You can do this--I did and I never, ever thought I could! :D

I would go with you if I could!!!!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Dandelion,

I have a major spinal disorder and 6 disc bulges just in my thoracic spine (lower spine). I went to a neurologist and he ran all kinds of tests. They weren't fun or pain free, I won't lie. That said, i have had MUCH more invasive tests before (keep in mind I'm only 17 years old!) I have had 2 MRI's and the second one was worse because I was in the hospital and was in a lot of pain without any pain meds. Overall, they aren't the worst thing I have ever done...by any means.

As far as the open MRI's, they are not as accurate as the tube ones. This is why they would usually rather sedate you than have you do an open one. I will just tell you, make SURE you take off your bra...LOL! I didn't when I was hospitalized because they took me out of my room when a lot of stuff was going on and I forgot. Then halfway through they stopped it and pulled me out to tell me there was metal showing up; they needed to get my bra off!! :lol: They brought in a female nurse and they told me I couldn't move or they'd have to do the whole thing all over again! I didn't move and she got the bra off and it was fine. It was very funny! When they put me back in the machine, I had to try hard to stop myself from laughing!!! :lol::D:P

Try not to worry...it really isn't that bad! If you ever want to talk, PM me.

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Are you taking sublingual B12? Are you totally gluten free including toiletries and other issues for CC? Have you checked your meds, OTC and Script for gluten? You may want to make sure you are doing all three diligently - the visit to the neuro may be unneeded if you do.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I too am scared and get paniky in small spaces. However when I had an MRI on my head, I just closed my eyes and practised my meditation techniques. I won't say it was entirely comfortable, but it wasn't scary either.

Just keep your eyes closed.

Joss

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You guys are so amazing! Who else could I tell my (ridiculous) doctor fears to and get this kind of understanding and encouragement? Thank you for being there.

Beth


Beth

Gluten free since January 2007.

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