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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.