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Old 11-27-2012, 06:18 AM   #1
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Another "could it be MS?" thread. Help, please?

Hi all,

A couple weeks ago, my leg fell asleep while I was sitting on the couch. I thought nothing of it, but the next morning my right arm and leg fell asleep. I got a bit nervous, and by the end of the day they were still asleep so I called this health line and they told me to go to the hospital immediately.

Anyway, by that point the feeling started shifting around, side to side but mainly staying on the right, and feeling a bit less asleep. The triage nurse checked me out, told me I wasn't having a stroke, and took some blood. Later, I was seen by a doctor who did a bunch of tests - poked me with a needle, made me fell him what colour something was, did some stuff to my feet, maybe spent 20 minutes.

He asked what I was concerned about, and I said I was worried it was MS because people online said it started with numbness, and my friend's sister has recently been diagnosed with it. He shone a light in my eyes, and said he was looking at the backs of my eyes because sometimes they're pale if you have MS. Mine were fine, and he said nothing else was concerning (other than the fact that half my body was asleep) but that I was right to come in. He said to wait a couple weeks, and if nothing changes to go get checked out.

I went home and called my friend who's sister has MS, and told her the whole story. She said that her sister's leg went to sleep for a week, and that's how she was diagnosed. That made me nervous again.

I went to my doctor, and she's sent me to a Neuro (jsut found out today.. I know it's good that I'm being taken seriously, but it scared me a bit too). They said it was because it would be faster to just go straight to them rather than getting an MRI and then getting seen after. That makes sense.

In the past couple weeks since the sleeping, I've been terrified. I've been googling (which I know I shouldn't, but..) and noticing every little thing that happens. My arm is asleep off and on, but mostly it's gone. But now sometimes I have a tingling at the top of my neck, my eye feels like there's something pressing on it, my libs feel tired or stiffer than usual, and now my tongue feels asleep, and I've been waking up in the middle of the night to use the loo, which I don't normally. I've even been thinking about a really stressful breakup about a year ago, and wondering if this is because of that. I know I haven't been diagnosed yet, and I'm getting ahead of myself, but every time I have something new happento me (eg: my sleeping tongue) that's the first thing that comes up.

I'm far away from my family/support system, and I've just started a new job...

Last edited by Thingy; 11-27-2012 at 06:54 AM.

 
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Old 11-27-2012, 07:25 AM   #2
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Re: Another "could it be MS?" thread. Help, please?

Welcome.

I would say that the doctor in the ER did you a disservice. While about 70% of MSers may experience or have experienced Diplopia (double vision), Nystagmus (sufferers experience uncontrolled eye movements resulting in jumping vision), or Optic Neuritis (ON) (inflammation of the optic nerve or scarring along the nerves that control visual
coordination and eye movements, you can be an MSer who does not. Perhaps the doctor was trying to exam you without telling you the truth behind his examination.

You did the right thing in having an exam to check for a stroke or other circulatory concern. With the blood tests and cardio work done, a number of blood borne mimicries are essentially eliminated.

You have some anxiety presenting in your words. I would encourage you to lay aside the anxiety because it can derail a diagnostic procedure for MS because it alone can be an MS mimicry. You mentioned starting a new job. This fact can add to the stress, especially in the uncertain economic conditions which are ongoing. Stress and anxiety can burden your body and can cause MS like symptoms to present.

If you wish to rid yourself of the nagging concern regarding MS, you need to see an MS Specialist. The neuro you are to see should be an MS Specialist or at the very least one who has experience working with MSers. Many doctors can go throughout their careers without coming into contact with an MSer. This lack of experience can cause many patients to wander aimlessly through limbo land bouncing from one doctor to another.

For now, learn to relax and keep a journal of your symptoms (onset, duration, etc.). You need not feel alone. Again, Welcome.
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Old 11-27-2012, 09:09 AM   #3
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Re: Another "could it be MS?" thread. Help, please?

Thanks for getting back to me, I really appreciate it. I just feel so wiggy and scared, I could really use a bit of hand-holding and comfort, since I feel so alone and far away from my family and closest friends. I haven't even been here for long enough to have built up a super strong support network yet.

I absolutely have anxiety. I think I'm a bit tense anyway (my whole family is!), but this is kind of taking over my mind. On a positive note, it's really diminished the importance of silly small things and reminded me of what's important in my life.

I should relax, I know, but it's really, really hard to. I just want someone to tell me what the heck is happening. Actually, I want someone to tell me what's happening, and that it can easily be fixed by vitamin B12 or something.

I'm in the UK. I went to my GP/doctor, and they sent me to a neurologist. I suppose if things are unclear after that, or if they think I'll need it, they'll send me on to an MS specialist? Initially it was just supposed to be the doctor looking at the MRI, so I suppose it's a step in the right direction.

I'm just really struggling now, and afraid to think about the future. Things keep reminding me, like having to opt in to next year's insurance and travel insurance plans at work, or wanting to book a trip, or joining a sports team for next year.

 
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Old 11-27-2012, 10:40 AM   #4
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Re: Another "could it be MS?" thread. Help, please?

If anxiety runs in your family, you might need to seek anxiety treatment prior to a diagnostic evaluation for MS. Anxiety can be a major mimicry of MS- BUT anxiety can also be a subset of MS. If you are exhibiting signs of anxiety, you need to seek help there first.

7 symptoms which might indicate anxiety are:
1. Excessive worry

2. Sleep problems

3. Irrational fears

4. Muscle tension

5. Chronic indigestion

6. Stage fright

7. Self-consciousness

The aforementioned are generally not part of an MSer's life unless they have anxiety as a subset of their condition. If you are in the UK and have private insurance, your process should go much faster than within the NHS.
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Old 11-27-2012, 11:37 AM   #5
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Re: Another "could it be MS?" thread. Help, please?

Hi Thingy, sorry to hear about your problem. If your neuro has ordered MRI and it comes free from ms lesions than you should relax. MRI is gold standard for diagnosis. If nothing comes in MRI (with contrast) than its not MS. I can make your mind relax by saying this. Thousands of people are living with ms (even some of celebrities). One movie star I know is doing roles in movies and living normal life. So relax, its not end of world. being said that (which should bring courage into you and make you perform normal job and chores) now plan your investigation get to heck of it. lets hope it comes out to be B12 deficiency. (b12 can change things overnight if severe deficiency) also check you vitamin D3. (they say most ms patients are low on d3). in anxiety there is mimicry and booster effects. so ignore the things for time being till the results come. people with ms come to terms with life by understanding that it is better than incurable cancers. (just to calm you down) but I hope and pray that it is non-serious kind of issue and by the way if its something like stroke you can't even write e-mails nor you can have balance to stand. take care. bb

Last edited by bbroke; 11-27-2012 at 11:44 AM.

 
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Old 11-27-2012, 11:44 AM   #6
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Re: Another "could it be MS?" thread. Help, please?

Quote:
Originally Posted by bbroke View Post
If nothing comes in MRI (with contrast) than its not MS. I can make your mind relax by saying this.
Please note that the MRI is not a specific test for MS. If you have MS in the early stages, the MRI could show clear results, but it could show lesions later. The MRI neither confirms or denies MS- it is just one tool used to eliminate possibilities.

Even if the MRI shows lesions, it would neither confirm or deny MS as well. The presentation of lesions provides another step towards knowing the cause. Lesions can be caused by infections, migraines, aging.....An MS Specialist will be able to help decipher your case.

bbbroke is absolutely correct, MS does not need to end your career. I enjoyed 20 years of work before I took disability. Other MSers can work their entire lives. MS, IF you have it, does not need to be a career ender.
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Old 11-27-2012, 12:13 PM   #7
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Re: Another "could it be MS?" thread. Help, please?

Hi- and welcome! I really related to your post. I am in the same boat as you, wondering if I have MS & trying not to worry endlessly over it. Scary, isn't it? I totally know the fear & anxiety you're feeling.

Your story sounds a lot like mine... I also started with a numb/tingly leg. I ignored it the first time, then sought treatment when it recurred. Like you, I'm also experiencing multiple symptoms now & it does scare me.

Hopefully we will both get answers soon. In the mean time, try not to stress or overthink things. As others have told me, seek out factual knowledge, familiarize yourself with diagnostic procedures & keep a journal of your symptoms. I've been keeping a journal ever since MSJayhawk suggested it. I hope that it helps give my neuro some clues when I get to see him next month. If nothing else, it gives me a place to put it all. Perhaps that aspect would be helpful to you as well, since it sounds like you are far away from friends & family?
Anyway, welcome....and if you ever want to talk, feel free. It sounds like we're pretty much in the same boat & perhaps we can help each other.

 
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Old 11-27-2012, 02:21 PM   #8
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Re: Another "could it be MS?" thread. Help, please?

Hi all,

Thanks for the support and welcome. Very much appreciated. It's nice to be able to vent a bit to people who won't think I'm being bonkers, and it's really helpful to hear from people who've been there and done the research.

@MS Jayhawk - I wonder if anxiety actually runs in my family. My dad is a (retired) psychologist, and as my grandma has aged he's noticed more and more anxiety coming out in her, but says she's always been high strung. And then I look at my dad and see some of the same qualities. I for sure don't react well to stress after a certain point. I pretty much worry a lot, and get all tense in my neck and shoulders, and clench my teeth. I even locked my jaw once. I AM in the UK, and am not sure about private insurance! I know my work offers it, but I don't think it covers pre existing conditions. And I won't be enrolled until the end of the week, so I think that ship has sailed. Sadly.

Am I right in asking if MS cannot be completely ruled out, then? If I got an MRI and nothing showed up, it wouldn't say I didn't have MS, only that they didn't know for sure? That's a bit scary, to have a "maybe" hanging over you like that. And then if you DO have them, it still can't confirm or deny anything? How do you ever know for sure one way or another?

@BBroke - Thanks for your kind words. It sounds like you're doing well...

@Cira - Sorry to hear that you're going through this too, but thank you so much for your message. How long do you have to wait for your appointment? What kinds of symptoms? What do you write in the journal, just the date and time and the symptom? How are you holding up, overall? I keep rocketing back and forth between thinking I won't have it, thinking I will and it'll be fine, and then freaking the doodle out and wondering who'll take care of me because I was too busy traveling to get married and have kids... the places your mind goes, eh?

 
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Old 11-27-2012, 02:48 PM   #9
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Re: Another "could it be MS?" thread. Help, please?

Quote:
Originally Posted by Thingy View Post
Am I right in asking if MS cannot be completely ruled out, then? If I got an MRI and nothing showed up, it wouldn't say I didn't have MS, only that they didn't know for sure? That's a bit scary, to have a "maybe" hanging over you like that. And then if you DO have them, it still can't confirm or deny anything? How do you ever know for sure one way or another?
As to the familial history for a propensity towards anxiety, I do not know if it is genetic or social upbringing or both. I have a nephew who is quite highly strung and he takes after my sister, but no one else among my siblings is like that.

MS can be ruled out, BUT not through an MRI alone. You need to be tested, poked, and prodded to eliminate everything you do not have. If it is conclusive that your problem is not neurological, then of course you could rule out MS. If you see an MS Specialist, they can run the tests and tell you if you have MS. You should doubt the veracity of any "one test wonder". You can also read about the Revised McDonald Criteria which is an internationally recognized set of guidelines to follow for diagnosing MS. If your neuro or doctor ignores this, doubt their veracity and seek another doctor.

The unknown can seem scary, BUT if you think it is MS, it is not really unknown and it is not fatal nor does it end your career; therefore, you should lay aside your fears and simply run through the testing for your own benefit.
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Last edited by MSJayhawk; 11-27-2012 at 02:49 PM. Reason: add

 
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Old 11-27-2012, 03:17 PM   #10
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Re: Another "could it be MS?" thread. Help, please?

SIt took me just over a month to see the neuro, which is pretty good, actually, but feels like forever. My appt is on 12/18. As for my symptoms....well....it started with the recurrence of numbness/tingling in my left leg, then it had the same sensations down my left side & in my right hand. Now, my right leg is having the same sensations, while my left leg is mostly better. I have pain in my hands, particularly my fingertips, which are extremely sensitive to heat & touch/pressure. I've been getting a squeezing sensation in my left lower rib cage that feels like someone grabbed me. I've also had bouts of dizziness, lightheadedness & slight visual disturbances. My coordination is also off- I drop everything & often have to try multiple times to pick up small things. In my journal, I write a date & time, the symptom, the duration of the symptom & any external factors or stimuli that could be related. If I'm fatigued, overheated, cold, feeling more anxious than usual, etc, I write that down.

Really, I'm holding up much like you are. I vacillate between thinking I have it & being scared of the diagnosis, thinking I have it but quietly accepting it, and thinking maybe I'm completely crazy for even thinking it's a possibility. I'm trying hard not to stress out, but it's kind of become the elephant in the room, you know? Like you said, the places your mind goes.... For now, I'm just trying to keep busy enough that I don't overthink it....Easier said than done, but as a full-time student & mother of 2 who also works outside the home, I generally keep pretty busy.

 
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Old 11-27-2012, 07:30 PM   #11
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Re: Another "could it be MS?" thread. Help, please?

Aww i feel.for you being without family an friends to.comfort you during this. I to am awaiting my first neuro appointment on 1214. I just seen my primary again yesterday just for refills an told him my anxiety was high an he understood that being in world of unknown is hard. They did find lesions on my brain an he referred me i also have bulging disc an bone spurs in my neck an everything is all a mess with me. Last week was horrible both mentally an physically. As soon as he mentioned ms i was in panick. The first place i came was here to this board an read old post an also posted because i was scared an really didnt know anything about ms. The support i get an see here is far beyond what i have got anywhere or on any other board. Msjayhawk an nikki are so educated an there for everyone. They truly are angels here. The more i read the less i am scared. I own my own business i am it as far as income an after long years of getting it going this year took off like crazy an then this i thought all that work an i would lose it but after reading posts i know if i do have it i need to make some life adjustments but i dont have to throw in the towel in my dream. I started doing breathing exercises listening to music exercise whatever it takes in the moment to get my self calmed down an it is working. I am on a higher anxiety level than usual as i am.high strung also but feel i got some.control over it. Maybe try that an see if it helps an certainly keep talking here. Take care. Tami

 
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Old 11-28-2012, 04:50 AM   #12
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Re: Another "could it be MS?" thread. Help, please?

Thanks again for all your supportive messages. I'm waiting for a call from the Neuro person to book myself an MRI, so the waiting game has begun...

I do wonder if whatever the heck is happening to me is shifting too quickly to be MS? I saw someone say to someone else on here that symptoms don't typically come and go very quickly. I think the longest I've had anything consistantly was a few days (sleeping half body) and while that's now mostly gone away (still happens every now and then), I have pins and needles (right now, a weird spot at the tip of my ring finger on my left hand) and an ahcy calf muscle, like I worked it extra hard. But then, that could be wistful thinking? And then again, I'd rather it be MS than something even more sinister. But the idea of slowly losing control is terrifying.

I think why it's so scary is that it IS unknown, even if you know it's MS because you have no idea what will happen or when. And I'm afraid all the things I love (sports, writing, photography, travel....even witty banter) will suddenly or slowly be taken away from me. I'm suddenly thinking about my own mortality, and it's scary!

@Tami - What kind of business do you run? Congrats on it taking off this year. How have you been managing it?

 
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Old 11-28-2012, 05:25 AM   #13
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Re: Another "could it be MS?" thread. Help, please?

This summer was in the 90s most of time an i work in our garage an wasnt having any problems with heat at all. I had a couple days where id gotten dizzy but my dizzyness is usually in april an oct. I went to.dr about my arms going numb an tingly when i woke up an a couple toes here an there. He sent me.for.mri asap. I just keep pushing along. Last week i disappointed myself as it was busiest week of year an i couldnt be up to my usual. But this summer i made it through the heat with little problem. Keep us updated please. Tami

Last edited by Administrator; 12-27-2012 at 08:08 AM.

 
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Old 11-28-2012, 05:54 AM   #14
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Re: Another "could it be MS?" thread. Help, please?

Quote:
Originally Posted by Thingy View Post
I do wonder if whatever the heck is happening to me is shifting too quickly to be MS? I saw someone say to someone else on here that symptoms don't typically come and go very quickly. I think the longest I've had anything consistantly was a few days (sleeping half body) and while that's now mostly gone away (still happens every now and then), I have pins and needles (right now, a weird spot at the tip of my ring finger on my left hand) and an ahcy calf muscle, like I worked it extra hard. But then, that could be wistful thinking? And then again, I'd rather it be MS than something even more sinister. But the idea of slowly losing control is terrifying.
MS symptoms are usually long and not a few minutes and gone type. The onset of MS can be rapid or slow. There is no predictor. One of the best things you can do is to relax and learn to avoid stress or to redirect it away from you. Once the first symptom appears, it can often be that our "first clue" comes because we have missed the earlier signs.

It is important to not give up on your quest. Some MSers who suddenly feel better only find themselves in another predicament later with no answers. Once you run the gauntlet of tests, then you should be in good shape whatever the outcome. Hindsight is improved if you have a benchmark to measure yourself.

At a minimum your MRI should include your head and c-spine and be run with and without contrast. This will provide the best information. Your MRI should not be the non-tunnel type of equipment, but it should be the tunnel type machine. You need the best images available to set your foundation.

Take a day at a time, relax, and make sure you enjoy some self-pampering. You might need to develop a new hobby which is constructive in helping you to relax and channel the stress away from your body. A new job can be stressful and being away from family only adds to this.

I spent 20 years in Japan working without family for 18 of those years. I found that attitude and acceptance goes far in living away from your "home". Japan is my home, too, because I made it that way. I immersed myself into the society and accepted things were the way they were because it was Japan and not America. This meant establishing a benchmark for a life in Japan. I did not compare things from what I had in the US to what I had in Japan. I also had a church to attend in Japan and soon my schedule was filled with social activities.

Stay strong. You need not fear the unknown and you are certainly not alone!

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