I'm Kelsey, and I'm "suspicious"

[hojita]

Hi. My name is Kelsey, I'm 23 and I live in Rhode Island. I guess I'm in a gray area? I'm not entirely sure.

It all started with hiccups.

Randomly, 7 years ago, I started hiccuping. First it was just once a day, then it increased. One my worst days I can hiccup 5-25 times an hour. Eventually, this becomes both painful and annoying. After bugging my PCP for a few years, I was referred to a neurologist just to see. The neurologist I first saw bet me a dollar(an actual dollar that he apparently keeps in his desk just for the purpose of being incredibly rude), that my MRI would be normal and my hiccups were psychological. I had the MRI done and never heard from him again. After the way was I treated, I didn't go out of my way to make a follow up appointment.

Fast forward just about two years and out of curiosity, the NP I now see pulls out my old MRI results and that guy owes me a dollar because they were not normal. So I had another MRI and an appointment with a competent neurologist and I'm told that my MRI is "suspicious of MS"

This never even occurred to me as a possibility. All I wanted to know was why I hiccup so much. I left the appointment feeling ok, with the plan of yearly MRIs and reassurance that I would probably never go on to develop MS.

Two weeks later I'm in urgent care with excruciating pain that I'm hoping/assuming is associated with a migraine(I've never had a migraine so the whole thing was weird.) Turns out the excruciating pain is actually trigeminal neuralgia and one of the "call me right away" symptoms I was so sure I would never experience.

So I saw my neurologist yesterday. Because of my age, apparently having trigeminal neuralgia makes MS seem even more likely. I was told it's "highly suggestive of MS". Now the plan is to step things up and rather than rule it out, she says we're ruling it in.

To say I'm overwhelmed would be...accurate. Last week I was only worried about what the heck I was going to wear to thanksgiving dinner, this week I'm reading about medications I might end up on sooner rather than later. I'm still trying to understand the basics. My pain is gone(it lasted 4-5 days but the last two days it was debilitating, hence the trip to urgent care), and I'm feeling good! It's hard to imagine that there could be something "wrong" with me. I don't even know where I stand on the spectrum. Was what I experienced an "attack"? Will it come back? I have lesions, have I had more symptoms I just haven't realized were symptoms?

Next up is another MRI and visual evoked potentials...? I don't even understand what is going on. The conversation about meds was just surreal. I never thought I would have to worry about MS. I'm not even sure I do. I mean, I guess i do, right? Oh, I don't know! I didn't even know what MS was until a month ago!

So that's where I am. I think I'm in limbo land but I can't be sure. Just hoping I can get some information and support here. Being overwhelmed like this and feeling like I have no control is so scary.

So yeah. Hello there. My name is Kelsey. :-)

[Fed Up]

Hi Kelsey;

So sorry you are having to go thru this at such a young age.

Like you said, no need to worry since it won't change anything. The only thing I do know for sure is, worry and stress CAN make me symptomatic.

It appears that all that can be done, IS being done for you, at this point. No need to worry, it won't change anything.

However, many of us here can understand how you feel...been there, done that sort of thing..

Please keep us updated and continue to read as much as you can about this disease. Oh, and ask away, some here know so much more than you could imagine!

Good luck on your journey... fed

[hojita]

Thank you so much for the warm welcome and thanks to the person who posted before but whose post seems to have disappeared. It was very helpful!

[kimik1]

Welcome and information

Hi Kelsey,

My name is Kim, and I'm a volunteer here at MS World (and also a person living with MS since August of 2011). I want to welcome you, and to say I'm sorry you're having to deal with the looming threat of an MS diagnosis.

That being said, the good news is, while it's overwhelming at first, MS treatment has advanced TREMENDOUSLY over the years, and the medication options we have now for the goal of controlling it are numerous. AND we can live productive, healthy lives while having MS!

I wanted to let you know, since you're sort of going through the diagnostic process, and in possible "limbo land" (it sounds like limbo to me, and like MS is on the radar based on what you've been told) that every Wednesday night, from 8 ET-9ET (7central), we have a chat here at MS World called Patiently Waiting, for people in just your situation, going through the diagnostic process, in limbo, concerned. I'm not sure if you've been to the chat area yet, so I'll give you a quick instructional tour.

At the top of the page where you log in, next to "message boards", to the left is a tab called "chat rooms". Click on that and you'll enter the main chat room, where there will almost certainly be a number of friendly "faces" to welcome you and chat; the chat room is always open, with the most traffic during the day and evening hours, but also with people there sometimes late into the night. To join "Patiently Waiting", to the right of the main chat window, at the top of the page are two tabs, one with people on it, and one with "thought boxes". You'll click on the one with thought boxes, and then scroll down until you see the room called "Patiently Waiting". When you see that one, double click on it, and you'll enter the room. I host that chat most often (my chat host/op name is KimOp) and HuntOp is my backup host and is there frequently as well.

It's a great place to talk with others who are going through the same process, as well as a great place to get information and learn. I'll be there tonight hosting from 7-8 central. I hope you'll be able to join us sometime (maybe tonight?) I am a nurse, and when I got diagnosed, I learned (and continue to learn) as much as I can about MS, treatments, possible outcomes, etc. I love helping people through their process, and I love sharing the many resources I have amassed over the past two and a half years.

Also, in my profile is my email address, I believe, and I'm happy to be a resource personally, should you desire that kind of support.

I hope you'll join us, if the chat sounds like something that might be useful to you. Our group is often small, 2-5 people, so there's plenty of time for personal attention, especially to someone who's newly entered the world of the unknown!

Take good care, and let us know how we can help. We're here to support each other in any way we can.

Hope to see you sometime in chat,
KimOp
kimik1
Kim

[22cyclist]

Hi Kelsey: Welcome to MS World! You are definitively in limbo for now. However, hopefully not for too long!

I also have Trigeminal Neuralgia, bilaterally in my case. It is awful. This is a disease in and of itself sometimes that can drive a person to commit suicide it hurts so badly. I am happy yours only lasted 3-4 days.

1. Was what I experienced an "attack"? Will it come back? I have lesions, have I had more symptoms I just haven't realized were symptoms?

Yes it was an attack or exacerbation. It will most likely come back. Not all lesions cause symptoms, it depends on the location of the lesions.

2. Next up is another MRI and visual evoked potentials...? I don't even understand what is going on.

You are getting serial MRIs to check and see if there is any change in your MRI over time like any active lesions, growth in existing lesions, new lesions, etc. VEPs measures electrical activity in the brain in response to a sensory input (like a reverse checkerboard pattern). This test is done because it can pick up subtle problems in the eye pathways before a physicians exam or an MRI can pick them up.

3. The conversation about meds was just surreal.

For thinking and comparing medications, go to the National MS Website and read about all of the different medications.
After that, come on here and read about the medications. A word of caution on the website: People mostly post about the bad stuff, bad side effects, not many post about the good side effects. However, you will get an idea of how the medications are for people.

I agree that you have had 2 real exacerbations. An exacerbation has to last >24 hours, be continuous, and in between exacerbations there must be at least 30 days. So that is why the other ones did not change.

We are glad you are here! Just jump in any of the posts and do join the chat rooms!

Take care
Lisa
Moderation Team

[hojita]

So I had the evoke potential test done and while I haven't heard from my doctor, the tech said it looked normal. Taking that with a grain of salt until I hear from my doctor. My next MRI is next week but now I'm confused. Should I ask for a different MRI too? Of the spine? I don't know if I should consider a lumbar puncture; my doctor said even if I have MS it might still come back negative.

The tech who did the test the other day said there was an MS specialist at that hospital he recommended (idk if he had MS, but he mentioned having trigeminal neuralgia which was nice because finally someone got the pain I felt!). I think even if my MRI comes back with no change, I might see the MS specialist to discuss meds and my general risk. I like my current doc but she has a wait and see approach and the more I read about MS, the more nervous that makes me.

I see my neurologist again Christmas Eve. Hopefully whatever she has to say won't ruin the holiday for me. I'm just tired of waiting. I'm having issues with gastroparesis too which apparently isn't uncommon with ms. If that's what's going on, I don't want to wait until things get worse! GP alone is making my life difficult. I'm 23, I want to BE 23 for once!

[hojita]

So for what it's worth...my MRI was "normal"; my new normal anyway. Still lesions, but no new lesions so that's good. I'm seeing the neurologist in the morning but when we last spoke (well, she left a message on my voicemail), she had said "No MS diagnosis yet". Which is good. I guess.

I'm just confused about what I should be doing. I'm still feeling overwhelmed. It's good to not be diagnosed...yet. The "yet" worries me and I feel like maybe I should go ahead and do ALL the tests just to see because I'm scared of waiting for something else to happen.

Just venting I suppose.

[aspen]

I had six weeks of TN (in January) plus two 6-7 weeks of right side weakness, and am still in limbo. It's an uncomfortable and somewhat unnerving place to be. Despite the above, I'm still "unlikely ms" according to my neuro. Lesions are too small, and he can't locate lesions for one of my symptoms that I guess should have an obvious lesion. The dx process can be long.

My neuro has not done an LP -- he felt it "was not the right time."

So sorry you're in this place ... unknowns are difficult. I'm seeing a counselor (never thought I'd ever say that lol) and she is very helpful.

Vent away. You are venting to folks who COMPLETELY understand.

[hojita]

As of right now, I'm waiting to schedule a neck MRI. I'm also going to have some weird test done to check for a nerve problem in my right arm since I keep losing feeling in one of my fingers and getting a shock type feeling up my finger (guess it could be the ulnar nerve? It feels like that funny bone feeling, but in my finger).

No LP for me....I really really don't want one. I'm thinking of going ahead and seeing someone who specializes in MS though because I would like to have MRIs of my back or whatever done. My mom's coworker has MS and she said that's what got her her diagnosis. My neurologist is really great, but she hasn't even suggested it and I just want the diagnosis if that's what's going on. The wait and see approach is killing me!! I mean, I would prefer to NOT have MS obviously, but I don't want to wait for something else to happen if I have something else going on somewhere that would get me a diagnosis and allow me to start treatment and all that.

My TN is all but gone. I don't get the sharp shooting pains, but I have an almost constant dull ache there. I don't know if that's "normal". Sometimes when I walk, if I step too hard or something, I get a dull shooting pain up the side of my head. It's terrifying because I'm so scared it will come back. I've been taking Lamictal, but I don't know how well it's working because that ache is still there. It's only in the same spot as the shooting pain was, and only on that side of my head. Ibuprofen does nothing for it.

I just picked up my prescription of Neurontin, but at 300mg, I'm so nervous about it. I took one today (I work overnights so I had to sleep all day anyway), and my pain went away but it also knocked me out!! The bottle says to take it 3x a day!!! I was assured that the sedation would eventually go away but I don't know WHEN. I can't drive if I take it and it sedates me, and I certainly can't work. It made the pain go completely away and I'd like to be able to be pain free again!!! I just don't know how long it's going to take until I'm used to it where it doesn't make me sleep. When I woke up, I was still tired and dizzy.

I guess I just wish things were clear cut. I feel overwhelmed at times because this is all new to me and so unexpected and I just don't know what to do. I'm supposed to be an adult, I should be able to make decisions, but I feel like....I don't know. I just want someone to tell me what I should do, you know? MS was never a concern for me. I only knew it existed! That was it. I knew nothing about it and I thought you could only get it if it was in your family. Wrong, obviously. And now I'm not only learning about it, but trying to figure out what the heck is going on with me! UGH.