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    So many symptoms - is this MS?

    Hello everyone ! First of all, excuse my english. I am 20M with no neurological disease in family history (except fibromlygia for my grandpa, does it count as neuro disease ?) and currently shaken with MS fears. I have seen 2 neuros who told me they were sure at 99% I didn’t have MS, but I have read enough about this disease to know you need MRI’s to confirm it or rule out. My MRI’s are scheduled in the end of July. Until then, the uncertainty and the waiting are killing me.

    Here’s a list of my symptoms to make it easier for reading, according to chronological order.

    February 2019 : Consistent pain in the chest ( heart/upper left lung area). I wasn’t very painful but left me anxious as it was localized in a critical area. Waited a few days and went to the ER. They checked both heart and lung and sent me home with painkiller. The pain disappeared after 2-3 days. Didn’t have a clue back then but could it be the MS Hug? I reckon the hug is often way more unbearable and doesn’t last that long (roughly 5 days in my case)

    March : Pain behind right eye. No vision alteration but the pain was very annoying, and was multiplied when I closed my eyes, leaving me sleepless for hours. Went to the GP and he told me it probably was ocular fatigue as I was spending a lot of time behind the computer for school work. The pain slowed down and left within a week. It was at that time I read about Optic Neuritis ( once again, doesn’t really fit my symptoms) and developed some anxiety about MS.


    March : The day after the eye thing stopped, I woke up with (perceived ?) weakness/fatigue on both my legs ( especially tights/quadriceps) and a few hours after that had an episode of bladder issue ( went to the bathroom to pee about 7-8 times in an 1H30). Those 2 new symptoms of course increased my anxiety. I was lucky and had a neuro appointment 2 days after. We did VEP test ( optic nerves were normal) and she checked reflexes on legs/feet , and told me it wasn’t MS at 99% according to my symptoms, but still adviced to run MRI’s on spine and brain to be sure.

    April : After that appointment well I was relieved for about a week, and felt like the fatigue on my legs was decreasing. Around that time, I developed another symptom. I was sitting in front of the computer and felt something like a pinch on my right spacula. Immediately after, the area roughly between right elbow and hind arm was going numb and lightly tingling for 30 sec, then stopping, then again for 30 sec... It eventually passed in 5-6 days.

    April : Got a cold, and the fatigue in my legs came back. They felt heavy, but I could still walk or climb stairs. Then I started having pain on my right thumb. I thought it was because I was spending so much time on the phone. Then the pain extended to all fingers, on both hands. They were (still are) aching, especially when I have my palm open and fingers stretch. this made me have (irrational according to my age, I admit) ALS fears. Then I developed slight tremor on both hands ( when I open my palm or hold my phone).

    May : Went to another neuro with that whole new hand stuff. He didn’t seem very concerned by those, and he made me an EMG test on both legs ( it was very fast, like 5-10 min, normal ?), checked reflexes again ( no Babinski or overreacting reflexes) , made me walk on toe and heels, the classic stuff. He looked 20 seconds at the EMG results and told me they were “pretty reassuring”. He also said, just like the other neuro, it wasn’t MS at 99% , because with all those symptoms it would mean I had a lot of lesions, which didn't seem likely to him.


    Now since about 20 days, I have a whole lot of new symptoms going on. I have a sort of internal vibration on my lower body when I'm about to fall asleep. I have minor twitching on my hands, arms, legs. Twitching in my right eyelid. When I'm laying down , I feel some kind of pulsation on my spine, upper back. WHAT IS ALL THIS ? MS ? PPMS ? BFS ? Fibro ? I guess the presentation of my symptoms fit more PPMS. Maybe it's some kind of BFS mixed up with anxiety. Does anyone had a similar symptom story ?

    Thank you for reading and for any opinions , sorry for the long post and the english mistakes.

    #2
    Hi kutaubud

    Welcome to MSWorld.

    Thank you for sharing your experience with us. Looks like you have a multitude of symptoms, which could be caused by any number of conditions.

    I am diagnosed with PPMS, and the onset wasn't anything like you have described. The onset of MS symptoms can vary from person to person, however.

    Your MRI's will be useful in providing your neuro with more information about whether there is anything going on in your central nervous system.

    It's hopeful that you've been seen by two neuros, who both have strong doubts about MS. It looks like, from what you have posted, that you didn't present with any objective signs of MS (or any neurological deficits) during your neurological exam.

    It is very difficult and anxiety provoking to have to wait for answers, to be sure. It's important, while you wait, to find ways to reduce your anxiety and stress, as those could even be adding to some of your symptoms.

    Also, you did a great job with your post, and your English!

    If you have any other questions, we'll be glad to help if we can.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by kutaubud View Post
      Hello everyone ! First of all, excuse my english. I am 20M with no neurological disease in family history (except fibromlygia for my grandpa, does it count as neuro disease ?) and currently shaken with MS fears. I have seen 2 neuros who told me they were sure at 99% I didn’t have MS, but I have read enough about this disease to know you need MRI’s to confirm it or rule out. My MRI’s are scheduled in the end of July. Until then, the uncertainty and the waiting are killing me.

      Here’s a list of my symptoms to make it easier for reading, according to chronological order.

      February 2019 : Consistent pain in the chest ( heart/upper left lung area). I wasn’t very painful but left me anxious as it was localized in a critical area. Waited a few days and went to the ER. They checked both heart and lung and sent me home with painkiller. The pain disappeared after 2-3 days. Didn’t have a clue back then but could it be the MS Hug? I reckon the hug is often way more unbearable and doesn’t last that long (roughly 5 days in my case)

      March : Pain behind right eye. No vision alteration but the pain was very annoying, and was multiplied when I closed my eyes, leaving me sleepless for hours. Went to the GP and he told me it probably was ocular fatigue as I was spending a lot of time behind the computer for school work. The pain slowed down and left within a week. It was at that time I read about Optic Neuritis ( once again, doesn’t really fit my symptoms) and developed some anxiety about MS.


      March : The day after the eye thing stopped, I woke up with (perceived ?) weakness/fatigue on both my legs ( especially tights/quadriceps) and a few hours after that had an episode of bladder issue ( went to the bathroom to pee about 7-8 times in an 1H30). Those 2 new symptoms of course increased my anxiety. I was lucky and had a neuro appointment 2 days after. We did VEP test ( optic nerves were normal) and she checked reflexes on legs/feet , and told me it wasn’t MS at 99% according to my symptoms, but still adviced to run MRI’s on spine and brain to be sure.

      April : After that appointment well I was relieved for about a week, and felt like the fatigue on my legs was decreasing. Around that time, I developed another symptom. I was sitting in front of the computer and felt something like a pinch on my right spacula. Immediately after, the area roughly between right elbow and hind arm was going numb and lightly tingling for 30 sec, then stopping, then again for 30 sec... It eventually passed in 5-6 days.

      April : Got a cold, and the fatigue in my legs came back. They felt heavy, but I could still walk or climb stairs. Then I started having pain on my right thumb. I thought it was because I was spending so much time on the phone. Then the pain extended to all fingers, on both hands. They were (still are) aching, especially when I have my palm open and fingers stretch. this made me have (irrational according to my age, I admit) ALS fears. Then I developed slight tremor on both hands ( when I open my palm or hold my phone).

      May : Went to another neuro with that whole new hand stuff. He didn’t seem very concerned by those, and he made me an EMG test on both legs ( it was very fast, like 5-10 min, normal ?), checked reflexes again ( no Babinski or overreacting reflexes) , made me walk on toe and heels, the classic stuff. He looked 20 seconds at the EMG results and told me they were “pretty reassuring”. He also said, just like the other neuro, it wasn’t MS at 99% , because with all those symptoms it would mean I had a lot of lesions, which didn't seem likely to him.


      Now since about 20 days, I have a whole lot of new symptoms going on. I have a sort of internal vibration on my lower body when I'm about to fall asleep. I have minor twitching on my hands, arms, legs. Twitching in my right eyelid. When I'm laying down , I feel some kind of pulsation on my spine, upper back. WHAT IS ALL THIS ? MS ? PPMS ? BFS ? Fibro ? I guess the presentation of my symptoms fit more PPMS. Maybe it's some kind of BFS mixed up with anxiety. Does anyone had a similar symptom story ?

      Thank you for reading and for any opinions , sorry for the long post and the english mistakes.
      I do not think anyone can rule out MS for you before the MRI's of the brain and spine.
      If I were to guess I would say you are a hypochondriac like me or/and have a slight somatoform disorder.

      Let me tell you a story my neurologist presented to me. Back in the day in mother Russia when the impact of the mind over the body was not well understood and believed in those scientists did an experiment. They made the subjects close their eyes and told them they will put a hot piece of metal on their hand. While the metal was not extremely hot to the point of unbearableness they will develop a small harmless burn where the metal was.

      So many of them had felt the hot metal and actually developed the predicted burn. So everything went acording to plan.

      Little did the subjects know the metal was at normal room temperature. The scientists never revealed that to the subjects and they published the paper much later on.

      If the MRI's do come normal and several neurologists say it's nothing to worry about JUST STOP. Going into this madness of self analysing symptoms may actually incline you to develop more symptoms, be more sensible to small normal changes in your body and have a bigger chance of developing diseases.

      If they tell you you are healthy be grateful and move on with life. Use your youth energy into something more productive.

      Comment


        #4
        Welcome kutuabud.

        Having symptoms is very stressful in itself. It would be rare to present with so many symptoms, especially coming and going in short durations and also a normal neuro exam.

        Inactivity and sitting for long periods of time on a computer can cause physical symptoms. Likewise, stress can too. How is your diet? There can be physical reasons, but trust in your doctor's.

        As hard as it is, try to be patient until your MRIs are completed. Worrying won't help you, but can hurt you. I would also stay away from Dr. Google. Try to balance sedentary activities with physical and eat healthy to eliminate other causes. Add stretching to your daily routine, including hands and feet.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Pain is Pain

          Pain is pain, and you want to find the source. Even if it turns out to be psychosomatic, it is important to face it. I hope it IS psychosomatic, but you’re taking the right steps to make sure you are healthy.

          I agree with those who say to live the best life you can if you’re told the tests are inconclusive. Nevertheless, it is ok to get a second opinion if you are having strong symptoms.

          Keep the faith and keep asking questions.
          All the best, ~G

          Comment


            #6
            Hello, I would like to thank warmly each one of you who took the time to respond to my post. It is reassuring to be listened.

            The thing is that I don't have any red flag symptom for MS ( Like let's say l'Hermitte, not being able to stand the heat, persistent numbness) but the things I'm dealing with for the moment ( Eyelid twitching, internal vibration) are both visible in MS or in other benign stuff like BFS. This in-between feeling is hard at the moment.

            Comment


              #7
              Hi Kutabud.

              I wouldn't even try to either rule MS in or out. As you say, your symptoms could either be MS, or a multitude of other things.

              I encourage you to continue to pursue a diagnosis.

              Also, please take care of yourself. No matter what the problem is, a healthy diet, moderate exercise, adequate sleep and good stress management techniques are important in returning to health and warding away additional problems.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment

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