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  • undercurrent
    I am new to this kind of thing.  

    I am a 42 year old female. I stated to have symptoms of MS about 3 years ago. I lost my vision in one eye off and on for about a month. The top of my head would get this cold numb feelings. They did a MRI and it showed multiple lesions on my brain but no lesions on my spine. They said I probably just had migraines. I tried to tell them I do not get migraines. However, they insisted that my migraines could be painless. Fast forward to about three weeks ago. I woke up in the middle of the night with both my arms feeling heavy and "asleep" like I had laid on them for hours. The one arm was better by morning, However, the other arm was heavy and pins and needles in it for days. Now, I am totally exhausted more tired than I have ever been. I am having trouble concentrating and when I go to say something the words escape me. I absolutely feel like I am losing my mind. I see the neurologist on Monday, but I am not hopeful. The last time he saw me he said everything I was experiencing was anxiety and I should seek out a therapist. Funny thing is I am a therapist and I know my body this is not anxiety.  I am not even sure what I am looking for here.   Maybe just some people who understand the uncertainty of not knowing. 


     
  • zonadanger128
    Hi Undercurrent
    I am also experiencing the same challenge currently. With a little bit of a twist, I am coming up on my 40th birthday in like 3-4 weeks. I lost my sense of smell a bit over a year ago and that is where my journey began. 
    I see an MS specialized neurologist NP tomorrow morning. I was supposed to see the actual MS neuro however he was unexpectedly called out of town this week, so yeah for another challenge. 
    The neuro I saw last year did the same thing to me and stated the lesions on my brain were migraines as well. Over the coming year, my symptoms increased and multiple Drs, hospital trips, and tests later I am still undiagnosed and now being told they think its MS....so off to the MS specialized Neuro I go. Well his NP for the moment. 
    One of my hospital visits for my symptoms were dismissed as anxiety and I was told I was hyperventilating and just need to relax. So a daily dose of Valium later I still have symptoms. 
    Is the Neuro you are seeing Monday specialize in MS? 
    • If it helps I would love to talk about it! I AM TERRIFIED myself as well.....Let's see if this helps you any.
    • Symptoms I have are:
      • anosmia (complete loss of smell)
      • the entire left side of my body is "the stranger" (that's what I like to call the feeling like when you have an arm or leg fall asleep because of laying on it or something) doesn't quite feel like your body part most days
      • pain in my right shoulder that shoots down my arm 
      • cognitive issues including slurred speech/loss of words/ mumbled speech/ mixed words/ focus challenges 
      • pain in my pelvic bones and ribcage that feels like my bones are trying to crush me internally
      • #exhaustedisanunderstatement
      • Double and/or blurred vision
      • Skin feels like it is on fire (sunburnt over the entire body like) and/or itching
    I feel like therapy is something anyone with MS may need ( I know I do, depression is kicking in bad with me). But also we all know our bodies, I've learned a lot of this comes with the territory, because of the invisible illness. Everyone keeps telling me to keep pushing forward, to keep trying, and to keep fighting for myself...But I also have seen where it takes YEARS sometimes if you're not in the right place at the right time with the right Dr or have some quick extreme onset of symptom that hospitalizes you and you get "lucky" enough to get an immediate diagnosis. 
  • undercurrent
    Thank you so much for responding to me.  I feel your fear and wonder all the time if what I have is MS.  You have a lot of symtpoms and I really hope you get some answers soon.  


    zonadanger128 wrote: Hi Undercurrent
    I am also experiencing the same challenge currently. With a little bit of a twist, I am coming up on my 40th birthday in like 3-4 weeks. I lost my sense of smell a bit over a year ago and that is where my journey began. 
    I see an MS specialized neurologist NP tomorrow morning. I was supposed to see the actual MS neuro however he was unexpectedly called out of town this week, so yeah for another challenge. 
    The neuro I saw last year did the same thing to me and stated the lesions on my brain were migraines as well. Over the coming year, my symptoms increased and multiple Drs, hospital trips, and tests later I am still undiagnosed and now being told they think its MS....so off to the MS specialized Neuro I go. Well his NP for the moment. 
    One of my hospital visits for my symptoms were dismissed as anxiety and I was told I was hyperventilating and just need to relax. So a daily dose of Valium later I still have symptoms. 
    Is the Neuro you are seeing Monday specialize in MS? 
    • If it helps I would love to talk about it! I AM TERRIFIED myself as well.....Let's see if this helps you any.
    • Symptoms I have are:
      • anosmia (complete loss of smell)
      • the entire left side of my body is "the stranger" (that's what I like to call the feeling like when you have an arm or leg fall asleep because of laying on it or something) doesn't quite feel like your body part most days
      • pain in my right shoulder that shoots down my arm 
      • cognitive issues including slurred speech/loss of words/ mumbled speech/ mixed words/ focus challenges 
      • pain in my pelvic bones and ribcage that feels like my bones are trying to crush me internally
      • #exhaustedisanunderstatement
      • Double and/or blurred vision
      • Skin feels like it is on fire (sunburnt over the entire body like) and/or itching
    I feel like therapy is something anyone with MS may need ( I know I do, depression is kicking in bad with me). But also we all know our bodies, I've learned a lot of this comes with the territory, because of the invisible illness. Everyone keeps telling me to keep pushing forward, to keep trying, and to keep fighting for myself...But I also have seen where it takes YEARS sometimes if you're not in the right place at the right time with the right Dr or have some quick extreme onset of symptom that hospitalizes you and you get "lucky" enough to get an immediate diagnosis. 

     
  • MS_Navigators
    Hi undercurrent,

    If you don't feel like your neurologist is taking your symptoms seriously or working with you to try to determine the cause for your symptoms, you may want to get a second opinion. You can use this link to search for a Partner in MS Care. You can also contact us at 1.800.344.4867 for a list of neurologists in your area. 

    The symptoms you mention in your post are common symptoms of MS. I included links about those symptoms below. I hope the information will be helpful.
    Fatigue

    Vision Problems

    Numbness and Tingling

    Cognitive Changes

    You may also be interested in this information about Possible MS and Diagnosing MS.

    Best,
    MS Navigator Stephanie 
  • anywhereoutofthisworld
    Very sorry to hear of your ordeal, thank you for sharing your story on here. I luckily was diagnosed quickly. I had my first really noticeable relapse in Mid may of last year. I awoke with sudden bad speech slurring, also the right side of my face went stiff and I couldn't smile. The stiffness in my face seemed to fade and go away in two weeks or so but the speech slurring dragged on for like a month. I don't like going to the doctor but I had an appointment in early June anyways for a blood pressure check so when I went in for that I told my regular doctor all about my speech issues and he said well I'm gonna order you a brain MRI. I explained how my mom (a retired nurse) worried I'd had a stroke. My mom pushed me to move the appointment up but stubborn as I am, I just went in early June as it was scheduled. So the MRI of my brain was ordered and I also was told to make an appointment with a neurologist. I started to suspect MS after reading about it during the time I was having the speech slurring episode in mid May. I wasn't sure what it was but MS seemed to fit. Then I get to the neurologist and he immediatly ordered blood work after quite a few MS type lesions were revealed to him in my brain MRI results. The bloodwork ruled out Lymes for example. Next he ordered me a C-Spine MRI. The cervical spine MRI results showed no lesions but through those results I eventually discovered I have cervical spinal stenosis (which was confirmed in mid August of last year when I saw a neurosurgeon who also wrote me a script for physical therapy). Next the neurologist ordered me to have a spinal tap which I had on July 18th of last year. By July 25th of last year following results of the spinal tap (which revealed lots of MS related protein 'o' bands), I received my offical MS diagnosis. I went to that appointment and I was 99.9% sure it was gonna be the one I would be diagnosed but nothing can prepare you for that moment. I remember calling my mom from the neuro's office in tears. My mom was a bit surprised you can say about the news, I was not as I already knew in my gut, I had it before he told me. Apparently I'd had MS for quite some time he suspects do to the sheer amount lesions and 'o' bands. I really hope you do get the diagnosis if you do indeed have MS, I couldn't imagine if I was in your shoes and knew I had it but was told I didn't. It's beyond frusterating, I have read of others who were in your boat. I now take Tecfidera for my MS twice a day, it was the first medication my neuro recommended. I also see a mental health therapist for depression/ anxiety/ ADHD and was told I may be bipolar. I also see a psychiatric nurse practiction & he prescribed me with Lexapro which has helped me some with depression & anxiety issues. Anyways I truly wish you all the best in your diagnosis journey, for some it can be quite a long one unfortunetly but don't give up hope, stay strong. I would recommend if this next visit is as frusterating for you as the last one, maybe seeing if you can get an appointment with an Ms specialist neurologist.

    I'll end this with a list of signs and symptoms of MS which can include:
    -----------------------------------------------------------
    Muscle weakness, stiffness or cramps
    Tingling, numbness or pain in your body
    Tremor (shaking) in your arms or legs
    Loss of balance
    Problems walking or moving your arms or legs
    Speech problems
    Vision problems
    Fatigue (feeling tired all the time)
    Dizziness
    Bladder or bowel problems
    Thinking and memory problems
    Depression

    Feel free to reach out & connect with me directly on here if you'd like. This site is a great community where you will never feel alone. That's so important with this Ms thing.

    The secret of life, though, is to fall seven times and to get up eight times.
    ― Paulo Coelho (from his novel: The Alchemist)
  • cartejd
    Hello,
    Thanks so much for sharing your personal experiences. I am eperiencing a lot of symptoms that you describled. I was recently diagnosed with having the early onset of MS. I was just informed of this a few months ago, To say the least, I was very shocked. I am in the process now of trying to figure out my next steps after turning 43. I was advised to research new medications that my doctor suggested and one of them that was mentioned was Tecfidera . Initially I was informed that this medication had a lot of risks involved. I was also provided with a few other medications but they would involved injections. I am trying to figure out if going back to work is even possible. Its good to talk to someone who has experienced or even experienced what you are currently facing and not to feel that you are all by yourself. Again thanks so much for sharing with us..
  • Avatar
    Undercurrent,

    Sorry to read your story.  I am worried though that if you see the same neurologist who blew you off the first time that he might do the same thing.  Please make an appointment another neurologist and if that one doesn't work out, try another neurologist.  You have to have the right neurologist (a MS specialist ideally) that you feel comfortable with and will really help you.
  • undercurrent
    You were right about the neuro.  He sent be for MRI but did not add contrast so there is no way to know if I have any new lessions.  I am at a loss.  I guess I start over with a new neuro.  It's just so much.  Feeling tired. 

    capitolcarol wrote: Undercurrent,

    Sorry to read your story.  I am worried though that if you see the same neurologist who blew you off the first time that he might do the same thing.  Please make an appointment another neurologist and if that one doesn't work out, try another neurologist.  You have to have the right neurologist (a MS specialist ideally) that you feel comfortable with and will really help you.