Search Discussions

Main Content

  • tawnielee
    I am 20 years old and for several years now I have had numbness in my limbs and terrible tremors that come and go. Then last March one day I woke up with a terrible headache and pain down the entire right side of my face. The next morning I couldn't see out of my right eye. I went to a specialist who told me that I had myokymia and peripheral neuropathy. I saw a psychiatrist who prescribed me ativan for the tremors, and after a while everything seemed to get better and I went on with my life. Then this past November my vision started getting hazy again and the headaches came back. Slowly I got worse and then on New Years Eve I woke up at 4:00 am and felt as if I was suffocating, my throat and chest were numb and I couldn't feel myself breathing. I was completely terrified and went to my doctor who told me it was caused by an allergic reaction and sent me to an allergist, but the numbness was spreading and the headaches were so bad there were days it hurt to blink. I saw a neurologist last month who ran a head MRI and it showed that I have multiple lesions through both hemispheres of my brain. She ran a Spinal MRI, but that came back normal. She told me that she believes that I have MS, but there is no way of knowing for sure yet. So she wants me to wait 6 months and have another MRI to see if more lesions have developed or if I develop lesions on my spinal cord. Before this I never knew anything about MS, and now I have been trying to do research but the possibility is still very scary to me. Reading about it I have ever symptom on the check list, but my symptoms come and go within days and make me doubt it. Even though all signs point to a high possibility of me having MS, anytime I try to talk about my worries at home people around me tell me that I am being negative and that I am fine, in hopes of keeping me optimistic but it only feels condescending. Has anyone started off with mild symptoms like mine that come and go, and how seriously I should be preparing myself for the possibility.
  • witchywomin
    I just signed up today here and saw this post first. You are all awesome humans. Thank you, so much, for making this not-yet-diagnosed-but-getting-there gal feel like I belong somewhere! My fears aren't abnormal, my symptoms aren't in my head and you all reinforced those truths for me, so...thank you. 
  • Sky_Guy
    It is difficult not to worry.  My best advice is to plan your life and keep moving forward.  If your worries are paralyzing you emotionally try doing some short term therapy for support.  The MS can take an eon to diagnose.  Usually if lesions are seen there is a diagnosis.  Symptoms can cycle as your's are. 

    In 6 months if you have more lesions you will have the option of taking an immune system modulating medication.  In the meantime, I advise taking at least 1000 units of Vitamin D3 a day and keeping your diet healthy.  Also do not overdo activity in the heat.  And most of all try to stay positive.  As far as the friends and family are concerned.  Denial is the first defense used when news like this is heard.  Give them some time and enjoy being treated as if you do not have MS for awhile.  If you are diagnosed you may find that treatment comes from the other end of the spectrum in the form of pity and that is more debilitating than the disease itself at times.  All the best and try to enjoy yourself too - you are too young to burden yourself with the worry of this disease too much.  Good luck to you!

    I forgot one thing - if you are a smoker - quit!  There is some corelation between MS and cigarette smoking.
  • caseydiviolette
    I was diagnosed two years ago with Clinically Isolated Multiple Sclerosis. Basically, my doctors and I have only seen one set of lesions and my symptoms go along with it. The way my specialist puts it, it can be a long road to a diagnosis of definitive MS. My FIRST neurologist was not a specialist and was less educated on the disease than I would have liked. Like KyleW said, be sure to get your bloodwork and a lumbar puncture done. Ruling out things like Lupus and Lyme disease are a big help in diagnosis. The LP might show signs indicative of MS or show nothing at all (which is what you want).

    I know I was frustrated with my old neuroligist when I found out I should have recieved an LP when he first saw me. Not to say that I want to have a definitive diagnosis, but it would save me from an LP later as well as give me many more treatment options.

    Best of luck to you in your journey
  • Kayla_1991
    My first neurologist asked me to come back in six months as well.  There is a reason for it, especially you're young and if he is not an MS specialist.

    MS is one of the most frustrating diseases to diagnose.  Like my doctor said, a diagnosis of MS is made when there's more than one attack over a period of time.  Within six months, the lesions on your brain will probably have changed.  Some might have healed, some scarred, some unchanged, and some might be new.  These changes will let your doctor determine whether or not you have had more than one attack over a period of time.

    Be sure to ask your doctor to order MRIs with contrast (to tell age, severity, and to find hidden ones), and you may ask for a spinal tap.  It doesn't hurt too badly now that they use a topical numbing solution (I had one when I was six; before they used the local.  Traumatic!).  Because you joined MSConnection, it sounds like you are already preparing for a diagnosis.  Personally, I think you're doing the right thing.  MS is very unpredictable, so you might as be as well prepared as you can, just in case.

    Also, research relapsing/remitting MS.  Because you are having attacks that come and go, it seems like you're experiencing severe exacerbations of something.  If you have MS, you may be diagnosed with this type.

    Good luck, hon.
  • Kyles_Mom
    I understand what you are thinking/feeling.  I am 44 years old.  On Halloween (2011) I noticed that my feet felt like they were sleeping.  It is odd when both of them feel that way.   Over the next few weeks that tingling feeling (needles & pins) moved up to my hips.  I have never been a fan of going to the doctor, but after the few weeks and the traveling up my body, I went to Urgent Care.  After several tests and x-rays they sent me for an MRI.  Within a few days, I was with a Neurologist who wanted me to go into the hospital that day for steroid treatments and additional testing.  After 5 days in the hospital the tinging numbness was almost gone.  They ran quite a few tests on me and I had a follow up with another Neurologist on Dec 1st.  That day, we (Dr, Husband and I) reviewed my contrast MRI and we saw a few spots on my brain that was scar tissue from lesions from some time in my past.  I had had an episode and didn't even realize it.  I had a lesion on my spine that was the cause of my episode in Oct/Nov.   Based on the results from testing, I was diagnosed with MS and went on Rebif.  

    Once diagnosed, you find yourself questioning aches and pains that you just shrugged off before.  I can remember my hands trembling or having tremors on rare occasion.  I do get headaches frequently but I am behind the computer most of the day at work - I just chalked it up to that.  Most of the time I still chalk the headaches up to the computer.  I have not had any additional episodes at this time.

    Since your doctor has not diagnosed you yet, I would not set your mind to thinking that you have MS.  Don't add that stress to your situation.   I would keep a journal of symptoms for when you go back to your doctor. 

    I am still new to all of this, but I felt I had to respond to you.  This is my first time on this website.
    I know these feelings that you are having.  I wa "diagnosed"  in August of 2010.  The diagnosis is not based on my MRIs or the Lumbar Puncture, as both of these, I have been told, are 
    not conclusive.  However my symptons all point to MS.  To try to rule it out, I was sent for some type of eye test (cant remember name) the results of this WERE conclusive enough for my neurologist to start me on treatment.  In addtion i was sent to a Neuro-Optimologist(?) who did an extensive exam of the back of my eyes and had picutes taken of the back of my eyes.  All this was conclusive to my doctor that it was MS. 

    Looking back now I can see that I have had symtoms for a long time.  Although I was diagnosed at the age of 53, they go way back.  The headaches and small shocks in my body started early and at the age of 27 after the birth of my son, I lost the vision in my left eye.  

    Still with all this...I don't have a "picture" of the MS to show anyone.  So there are dis-believers around me.  It is at times difficult.

    BUT!  Things are so much better for us with MS today than it was for my Aunt and cousin who also had it.  People with MS are leading great lives and there is much more publicity about it.

    I pray that it is not MS for you....and please do not worry yourself about it until they confirm it. But if it is to be, than know you are not alone.  There is a whole bunch of us out here.
    Today was my first day here.  I was drawn to your comments about once being diagnosed, past symptoms made sense.  Even though I was officially diagnosed in 2010 at the age of 53, my first symptoms appeared in my 20s.   when i was 27 i lost the vision in my left eye after the birth of my son.  but then, almost 30 years ago, they relied on a cat scan and those manual test that neurologist do...asking you to touch your nose with your fingers etc.

    I am not happy about this....but it is making sense.
  • Outdoorslover
    I might add that for me diet makes a huge difference. I eat a diet rich in multiple colored vegetables several cups each day. I also do not eat any gluten products, very little saturated fat, and take Omega 3 supplements each day. I do take Vitamin D but I take up to 10,000 IU's a day depending on how much mid-day sunlight I get. The less sunlight the more vitamin D I take. I also have my blood tested twice a year for my vitamin D level. Good luck but do not worry you can do well if you make some accommodations. 

Related Content

You may find some of this other information useful