It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Open to All Other Health Topics Message Board

  • Is this MS? 1st Neuro tomorrow

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-26-2016, 02:29 AM   #1
    PixiePainter
    Junior Member
    (female)
     
    Join Date: Dec 2016
    Posts: 15
    PixiePainter HB User
    Exclamation Is this MS? 1st Neuro tomorrow

    Welp, heres another story for you all, as i'm sure you're used to it. I have had weird symptoms since I was a child but brushed off as "growing" or it just seemed normal, since it was always my normal. But recently, the past 4-6 years or so i've had some weird symptoms that I've never gotten answers for and now i'm wondering if they could be related to MS. My most recent issue that has gotten me a referral to a Neuro (who i see tomorrow) was that I had an intense first time attack of Trigeminal Neuralgia. But i'll get to that.... A little about me, i'm 28, fairly healthy, and up until these weird things started happening I was in the BEST shape and health of my life. Please read this. I've never talked about this to anyone and those who know a little (besides family) look at me like i'm crazy.

    I think it all started with intense rib pain about 5 years ago that had no cause. I just woke up that way. Shooting pain that wouldn't stop that went from my back and cradled around to my side just under where bra hits. The pain felt like it was in between my bones, sometimes on the bone, Mainly my side rib, and always just on one side. I ended up getting a massage the first time which made it worse the next day. Couldn't hardly breathe or sit up by myself. This lasted WEEKS, MONTHS.x rays showed nothing. Chiro helped a little but I believe it went away on it's own. Only to return 2 more times, once on each side. I chalked it up to a bad bed. Currently have a new one and the rib pain is back, tolerable, comes and goes throughout the day, and has been around for maybe a few weeks, seems to have gone away today though.

    I was fine for a few years, then about 2.5-3 yrs ago i was working out (like i said, best shape of my life). Had finished a workout and couldn't stop the air hunger. I could breathe deeply, but couldn't catch my breath if that makes sense. I've had this sensation for years on and off, where i just breathe deeper every few breaths because it feels like i'm not getting enough air. But this was worse, and though i could breath i couldn't breathe (i know that doesnt make sense), my hearing faded out, ears ringing, tunnel vision, and i started "passing out" but didnt pass out. Legs weakened, crawled on the ground until i couldn't move them anymore and just layed there till it passed.

    Shortly after that (weeks?) I started getting what i call "head rushes". I would be doing something monotonous like laundry, or talking on the phone, and all of a sudden it almost felt like i was tipped upside down. All the blood to my head, heart in my ears, rushing sounds, weird vision, vertigo feeling. This happened for weeks and got worse and worse. It evolved to where it started to feel like someone was sitting on my chest also. I went to the ER multiple times. Nothing found, MS and Lupus casually thrown around but no one checked me for anything. I thought nothing of it. I wore a heart monitor for weeks, nothing found. My doctor told me it was panic attacks. Probably because i mentioned anxiety at work a while before. THIS was NOT anxiety, but doc knows best right? I thought i was having a stroke or heart attack. During the same time, between these attacks, I would feel slight tingling on one side of my face. But no one believed me, and was still told anxiety. Thus began the "lets just throw her to psych" every time i came in with new symptoms. So eventually, i just didnt.

    Next, about 6 months ago I started feeling like my right leg was heavier than the left. It felt harder to control, and my hip felt tight. I had to try harder to keep my normal gait. I don't think anyone noticed, but the effort was exhausting for me. At this time I was also running into walls more. As though I didnt know how much space I took up, or my peripheral was off. Id just smack the corners of walls all the time. I'm clumsy, and i thought i was sleeping wrong so i wrote it off again. Also during this time I was having extreme itchiness in my arms, hands, legs and feet. My boyfriend lives with me and never had any of this so i don't believe it to be contagious or any kind of rash since i had none. Also would wake up with weak, swollen feeling right hand and stiff right leg. Dropping things more too. All of this went away after about 2 months.

    Fast forward to this October where the dreaded TN happened. Thought it was dental pain, two dentists said no. 3 docs said TN, but no one really pushed for Neuro, I had to ask. They all said i'm young and healthy, nothing to worry about. But i feel like i've been looked over, i've been scared to go to the doctor for my symptoms because i feel they get written off or i'm looked at like a loon. I work with the public in a very social job and this is effecting me big time. No one understands and i'm scared. And then i feel just crazy because the symptoms go and i think "did that even happen?" Fortunately (or not) the TN was traumatizing enough to not feel that way.

    Currently my symptoms have calmed down. I get tingles in my mouth when i'm stressed, and i have a harder time controlling bladder, or rather when i have to go i have to GOOOOO haha. This is so embarrassing, i am young, and no one will take me seriously. My biggest fear is i go to this appointment tomorrow and i'm brushed off again. Any tips on what will make this appointment successful/productive. And do my symptoms seem like anything to be worried about?

    Bless your hearts for reading all of this.

     
    Sponsors Lightbulb
       
    Old 12-26-2016, 02:40 AM   #2
    PixiePainter
    Junior Member
    (female)
     
    Join Date: Dec 2016
    Posts: 15
    PixiePainter HB User
    Re: Is this MS? 1st Neuro tomorrow

    Also forgot to mention weird skin symptoms. about 2 years ago I also had swelling in my lip for no reason, and a few months after that my lips had this burning sensation for weeks. Just raw and burning for no reason. I thought I had a bad reaction to some tea, but not sure. Doc couldn't tell me either. My lips felt like pulling velcro apart every time i had to open them they were so sore and sensitive. Also before any of this I had a weird bout of hives that sprang up on my face multiple times out of no where. Not sure if its related or something i should mention to Nero tomorrow. A few days ago i had what looked like a cold sore starting on my lips with tingling, and another red spot also tingly, but went away within a few hours, as though it never happened. This could have been stress? I don't know anymore. Feel like giving up.

    Last edited by PixiePainter; 12-26-2016 at 02:41 AM.

     
    Old 12-26-2016, 05:41 AM   #3
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,193
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: Is this MS? 1st Neuro tomorrow

    PixiePainter,
    I am sorry you are feeling so badly. This is a lousy time of the year for this!

    Unfortunately, the stress of this time of year can also increase symptoms and increase anxiety/ stress.

    Can I ask why you think you might have MS? None of your symtoms are the usual symptoms which people who suspect MS, describe. And, all of your symptoms can be attributed to many other things besides Multiple Sclerosis.

    TN can be a side effect of MS, but is also very much a stand alone disease.
    If dentists have ruled this out...why are "3 docs" saying it is TN?

    The rib pain which you discussed is closely related to the MS hug, but the way you describe it, I lean towards thinking it is something else. MS hug comes and goes, but not like you describe. Most people get it once or twice for a day or two, and it stops entirely. Ive been dx for 12 years and have had the hug less than 10 times in my life...each time it comes on, I usually only get it once and it appears again 5-10 months later, randomly. My trigger for this is always high stress times.

    Head rushes, is not an MS thing. The one leg feeling heavier than the other, also not an MS thing...

    Anxiety can cause every one of your symptoms...and although you say it isnt, could it actually be? Health care anxiety, knowing that something is wrong, but not knowing what it is- can trigger all sorts of weird and unusual symptoms. Staying off the net can help you decrease this. The other thing which can cause some of your symptoms is vitamin deficiencies. Have you had your blood work done recently and was everything okay? Have you had an MRI of any part of your central nervous system? Have you had a neurological exam by a doctor?

    If you truly suspect this might be MS, please ask for a neuro consult and start there. Your general doctor should be able to do a basic neurological consultation and should send you for futher eval if he/ she finds anything. OR you can ask for a referral to a neurologist if you can get one.

    I really hope you get further testing done; as you know your body best and if you think something is wrong, it might be....Im just not convinced you are looking in the right place at MS at this time. I hope you feel better soon.
    MSNik
    __________________
    RRMS- dx 05

     
    Old 12-26-2016, 08:13 AM   #4
    Snoopy61
    Inactive
    (female)
     
    Join Date: Nov 2007
    Posts: 1,565
    Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
    Re: Is this MS? 1st Neuro tomorrow

    Hi PixiePainter,

    Quote:
    Had finished a workout and couldn't stop the air hunger. I could breathe deeply, but couldn't catch my breath if that makes sense.
    This is not something MS would cause.

    Did you discuss this with your Primary Care Physician? Have you been evaluated for Asthma? Exercise induced Asthma can cause what you experienced.

    Quote:
    i just breathe deeper every few breaths because it feels like i'm not getting enough air. But this was worse, and though i could breath i couldn't breathe (i know that doesnt make sense), my hearing faded out, ears ringing, tunnel vision, and i started "passing out" but didnt pass out. Legs weakened, crawled on the ground until i couldn't move them anymore and just layed there till it passed.
    This is not something MS causes.

    I can only guess, but it appears when you couldn't get your breath after exercising anxiety kicked in and you hyperventilated which causes all of those symptoms you experienced. If that starts to happen again: get a lunch size PAPER bag, put over your mouth and nose and...breathe. This is a quick and easy way to restore normal breathing.

    Quote:
    I would be doing something monotonous like laundry, or talking on the phone, and all of a sudden it almost felt like i was tipped upside down. All the blood to my head, heart in my ears, rushing sounds, weird vision, vertigo feeling. This happened for weeks and got worse and worse. It evolved to where it started to feel like someone was sitting on my chest also. I went to the ER multiple times. Nothing found
    Quote:
    I thought i was having a stroke or heart attack
    Quote:
    My doctor told me it was panic attacks.
    Hundreds of people end up in the ER each year presenting as you have and fearing they are having a heart attack. The diagnosis for the majority is Anxiety/Panic attacks. Anxiety/panic attacks can present as you have explained as well as symptoms that mimic those seen in MS.

    Quote:
    I also had swelling in my lip for no reason
    This isn't something MS would cause. MS also does not cause hives.

    Have you ever tried using anti-anxiety medications? If not, it might be worth trying. Anxiety/panic attacks can cause body wide physical symptoms. If anxiety/panic attack are treated a person will usually see a decrease and sometimes complete resolution to symptoms.

    Best wishes on your Neurology appointment.

     
    Old 12-26-2016, 12:35 PM   #5
    PixiePainter
    Junior Member
    (female)
     
    Join Date: Dec 2016
    Posts: 15
    PixiePainter HB User
    Re: Is this MS? 1st Neuro tomorrow

    Thank you for your quick replies! This message board is the bees-knees.

    MSNIK:
    I guess I thought "maybe ms?" and I finally posted here because I came across the "ms hug" description while I was trying to find answers to my TN episode. I wasn't looking for it, but stumbled across it and it is the only description i've found that sounds exactly like what I experience with the pain in my ribs, and sometimes generally across my midsection, almost as though my shirt or bra is too tight. I had written that pain off to bed/sleeping wrong for so long it was really shocking to hear a description of what i've experienced so many years ago.

    About the TN: I should have been more clear, sorry. I went to two separate dentists for extreme mouth pain that went from my right upper back teeth, into my cheek, up to my temple, up my nose and around my eye. But started in teeth. Both dentists said it was not dental and to see my doctor. Doctor said TN and gave me Tegretol (sp?). The pain didnt stop so i just kept going back hoping there was something they could do, or some test so they could tell me this wasn't dental pain for sure, each time they all said it was TN. After a while it stopped, but still not sure if it was from meds or it just stopped on it's own. So i've already been told I have TN, but they aren't sure what caused it. Currently I don't have terrible symptoms with it. I get a weird squinty and tingly feeling under my eye sometimes as though i need to open it more or rub my eye, and tingling/scrapey feeling in gums, along with a super odd feeling in the one tooth that started it. It comes and goes, when its gone its literally like it could have never happened.

    I wouldn't say I have healthcare anxiety or at least I didnt UNTIL i started feeling off. I wouldn't rule out stress though as a possible cause or trigger for at least the TN and allergic-like reactions. It's pretty awful to feel like you're the healthiest you've been one day, and then the next it just all goes down hill. That's how i've felt the past 3 years or so. I am not in any way convinced that i have MS, I think I was just very taken back about the similarities in the unexplained rib pain. I suppose the "heavy leg" feeling could really have been from sleeping wrong? It was quite bothersome though, enough that I almost called doc, but thought i was just overreacting because it seemed weird. I've written a lot off, but those things still knock at the back of my mind you know?

    I haven't had blood work done in a while. A vitamin deficiency could actually be very possible. My diet has been lacking since all of this started. I've had trouble eating on and off the past few years, as nausea has been a friend of mine since around the time I started getting those head rushes. I've had ultrasound, nothing. But put on Omeprezole which didnt seem to do much either. It comes and goes though, and sadly I think i've just become use to the knawing pain, though i do think it's gotten better.

    SNOOPY61:
    I was diagnosed with Asthma as a kid, usually allergy related or when i get sick and stuffy i'll wheeze. I do have to stop every so often when running because of that air hunger feeling, so you're right, this could be that. It doesnt feel like I can't breathe or that i'm wheezing, it feels more like no matter how many deep breaths I get in i still can't get that satisfying breath I need. It's never gone so far as to cause me to almost pass out except for that one time, but ashtma would make the most sense. I haven't been checked for it in a long time to see if its gotten worse. Although I don't feel the air hunger feeling all the time.

    I'm not sure about the panic attacks. When all of this happened I had never had one before and when the head rushes and heavy chest feeling would happen it wouldn't be connected to anything. i'd usually be doing something simple and mindless, and when these occurred i'd say i was probably the happiest and most content i had ever been, so it's just such a shock to hear it could be panic attacks. Since this started, years after, i have had a few REAL panic attacks from build up of stress and I can say they definitely feel 100% different to what I experienced those years ago. But anxiety is weird and maybe it can change? It just all seems strange to me the way it came on when life was going the best it had been, probably ever for me. Really discouraging. The doc did put me on Buspar which made me angry and caused more anxiety as I felt just off and harder to think. She then gave me Lorazepam to take when the attacks would happen, but they never came back like that again, so i'm not sure if it would have helped with those symptoms or not. Currently I don't take anything for anxiety. I do see a psychologist and psychiatrist since these things occurred, and have been diagnosed with adhd, and those meds actually seem to calm me down more than the anxiety meds as i think most of my actual anxiety comes from the fear of not being able to focus at work. So at least we got that one down!

    I'm definitely keeping my appointment, which funny enough, isnt today haha! I wrote down the wrong day, derp. Waiting for a call back about when my real appointment is as their office is closed today for the holiday.

    Again I can't thank you enough for your replies, it does put my mind at ease that maybe the majority of this is just stress. I have felt in the past few months that my stress threshold is just non existent now a days. Feels like it's been gradually wearing down, although things were going well in life just before the TN started, which is very discouraging since the meds they put me on made me feel insane and lose parts of my days. I finally feel normal again after a few months rest. And i'm really hoping there are some answers for me, if not, I hope to start feeling like I did before all of this happened.

     
    Old 12-26-2016, 09:31 PM   #6
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Philippines
    Posts: 9,816
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: Is this MS? 1st Neuro tomorrow

    PixiePainter,

    Welcome

    Best of luck. I really hope it goes well for you. Patience is necessary. Allow time for the testing to be done. It is not easy. We will be here with you.
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    The following user gives a hug of support to MSJayhawk:
    PixiePainter (12-27-2016)
    The Following User Says Thank You to MSJayhawk For This Useful Post:
    PixiePainter (12-27-2016)
    Old 02-22-2017, 07:13 PM   #7
    PixiePainter
    Junior Member
    (female)
     
    Join Date: Dec 2016
    Posts: 15
    PixiePainter HB User
    Re: Is this MS? 1st Neuro tomorrow

    Hi you guys! I'm finally back to update on my BRAIN MRI, although I have literally zero idea what any of it means haha. In the report my nero states he is "Evaluating for aneurysm or tumor contributing to right trigeminal neuralgia." So this wasn't specifically for MS, just to check and see if there is anything specific going on that caused the TN. The nurse who called me says it came back normal though the report does say "There is a persistent right trigeminal artery. A moderately sized vein contacts the inferior, anterior and posterior aspect of the right trigeminal nerve at the root entry zone series 13 images 53-55." But she said that's nothing? I know you guys probably don't know much about TN (just thought id add incase), BUT i also have THIS on my report

    CEREBRUM: Single punctate focus of bright FLAIR signal in the high left frontal
    subcortical white matter.

    and i'm wondering if it's anything to worry about given my other symptoms? She didnt seem concerned but the Neuro wasn't zoning in on my other symptoms and just looking for the TN in this scan. Is it normal to have a spot like this on my MRI at 28? I know you guys aren't doctors, but just wondering if anyone knows what all that means? I will be emailing to have the doc explain, but also wanted to update and ask anyway. Hope you are all well!

     
    Old 02-22-2017, 08:14 PM   #8
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Philippines
    Posts: 9,816
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: Is this MS? 1st Neuro tomorrow

    PixiePainter,

    You could have spots/lesions at any age realistically due to the number of possible causes for lesions.

    The best explanation will come from your doctor. If your neurologist is an MS Specialist, then it could be evaluated the best. Otherwise, ask for the opinion of an MS Specialist.

    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Closed Thread

    Tags
    diagnois, mult sclerosis, trigeminal neuralgia



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 06:23 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!