Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Happens At A Neurolgist?

Dandelion

Recommended Posts

Dandelion Contributor
Dandelion
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Nancym Enthusiast
Nancym
Posted

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.

Dandelion Contributor
Dandelion
Posted
  • Author
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

~alex~ Explorer
~alex~
Posted
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.

Aligray Apprentice
Aligray
Posted

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 :)

LoriC Apprentice
LoriC
Posted

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

Dandelion Contributor
Dandelion
Posted
  • Author
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. :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

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?

Dandelion Contributor
Dandelion
Posted
  • Author

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.

kbtoyssni Contributor
kbtoyssni
Posted

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.

darlindeb25 Collaborator
darlindeb25
Posted

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!!!!

confusedks Enthusiast
confusedks
Posted

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

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Joss Rookie
Joss
Posted

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

Dandelion Contributor
Dandelion
Posted
  • Author

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,920
    • Most Online (within 30 mins)
      7,748
    MLSpade
    Newest Member
    MLSpade
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.