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NOT taken seriously for MS fear. I want life back. Don't know what to do.

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    NOT taken seriously for MS fear. I want life back. Don't know what to do.

    I have seen many doctors and specialists for many of the symptoms that I've had over the past 2 years. I have many, many symptoms that would come on gradually, go away and then come back. I am a 19 year old female and a sophomore in college in the northern part of the US which puts me at risk for MS already. MS doesn't run in my family but I also am aware that MS doesn't discriminate and people can still get it regardless. I don't know what else to do at this point since it seems like my doctors have not tried thinking about all of the correlating symptoms as I have and they continue to think they are all separate issues or anxiety. I don't know what to do or where to turn to get help anymore. I have been so distraught over all of this that I almost thought I had some sort of schizophrenia or was Bipolar (I saw my psychiatrist and he told me I don't though). My concerns are starting to drive my family and fiance up the wall.
    Symptoms:
    -Costochondritis that is chronic (It is a benign rib inflammation). It will go away and come back for long periods of time. It recently got worse and spread to the other side of my chest. I get spasms and twitches with this pain. I work with a rheumatologist on this. (Contracted it 2010- present)
    -I had random painful urination and urgency (no incontinence or anything like that) my freshman year of college. It lasted for about 4 months. I had thought I had intersistial cystis but my doctor simply diagnosed it as a tight pelvic floor due to clenching muscles too tightly. These symptoms will come and go as well. (2011- present)
    -Vertigo, Lightheadedness, and chronic Nausea. (2010-present) Sometimes vertigo will last for one week or two at a time and then go away. Got it my junior year in high school.
    I had constant nausea my senior year of high school for about 6 months. It only comes on during menustration now. I have now learned that I have some sort of vestibular disorder (inner ear disorder.) My doctors used to chalk up the nausea to just hormones. Unfortunately, I have now learned that MANY inner ear disorders (such as Meniere's Disease) produce the SAME symptoms as MS! It is common that people with these inner ear disorders will undergo testing for MS to rule it out which puts me in an extreme state of panic.
    -Tingling, Burning, Slight numbing, Prickling, Crawling sensations all over body. (2012-present) They came on after a period of severe stress over all of this. Now I get them immediately any time I happen to get anxious and worried.

    A couple months ago, I started to connect the dots and see that my symptoms do sound a lot like MS. I visited a Neurologist a couple months ago for those symptoms (I saw him BEFORE I experienced tingling, paresthesia sensations and before learning about my possibility of inner ear disease that causes dizziness and nausea). He did the Babinski reflex test on me and said I was negative for MS. He told me I had perfect coordination, vision, and everything etc. Unfortunately about a month later, I developed the tingly, prickly, and slight numbness sensations in my arms, legs, and all over my body that were constant at one point. (They now come on immediately when I get anxious). I saw my general doctor about those symptoms and she also did the Babinski reflex test and said I don't have MS. It was a week ago I learned about the vestibular ear issues that I have. I even get more worried because I read of one person with vertigo that didn't have Meniere's disease but also had a negative MS MRI and the doctor told her that she could still have MS and basically she will have to wait and see. I am convinced that my strange medical symptoms and episodes of weirdness are not all coincidences. I think they are related to MS but I hope that I am wrong. I know that no one here can diagnosis me but the reason I am posting this here is because I am at a loss for what to do. I clearly do have medical symptoms that scarily seem like MS but at this point, I feel like if I go back to more doctors they will just push me away and get annoyed with me.

    #2
    I can understand how this is all frightening, overwhelming and confusing as heck. I think you do well by keeping a journal of symptoms - onset and what triggers them and what not. It's good for your sake and it also helps the doctors see where things are coming and going.

    One of the biggest things I've learned in my long journey of waiting to find out what is going on is that there are periods of time to push for answers and then there are times to rest. If symptoms are relatively stable, your doctors are aware of them and you've done what you can, it may be time to have a period of rest. This can allow you to process the emotional baggage that comes with this sort of thing. You can also learn to adjust and figure out how to work within your symptoms so that they are less stressful. It can also be a time to grieve for what you once had and to come to terms with where you are now. I've been through this with the diagnoses of fibro, endo and others. There is a ton of help out there in the form of courses, books and support groups.

    Once a symptom becomes more troublesome or a new symptom crops up (or if they're minor symptoms, maybe a batch of them), it's time to see the doctor again.

    Also it's great to see therapists. Not only do they equip you with good ways of coping with chronic conditions, but they can give written reports on your state of mind. This can help dismiss any doctors concerns of how much of the illness is caused organically or mentally. Its important to remember that the mind and body are not separate. They will always affect each other. There is no shame in any of that, and we should treat our minds with the same respect that we treat our bodies and to take care of our emotional selves.

    As you've noted these can be MS signs but they can also be signs of a plethora of other illnesses. Unfortunately it's often a waiting game. I love that we have the ability to support each other online and in face to face peer support groups.

    Best wishes.

    Comment


      #3
      Hi scared and confused

      sorry to read your having such a hard time....sounds like you have more than one issue!

      Have you hear of panic attacks? It's a terrible name and a very misunderstood condition...It is usually brought on by 'misfiring' and 'wires crossed' in the brain. The body goes into fight or flight mode and retains too much carbon dioxide causing light headiness, numbness and tingling and even nausea..

      sometimes relaxed, deep breathing helps bring in the oxygen and release the carbon dioxide..Stress makes it worse but is not always the cause..It's a vicious circle...symptoms out of nowhere are very stressful!

      good luck, hope you get some answers..try the relaxation breathing when symptoms appear and hopefully that will help..

      Good luck!
      Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

      Comment


        #4
        I am so sorry you are feeling bad.

        Neurology is a very localizing "sport", meaning doctors can tell a lot from the little tests they do that seem so ridiculous.

        Like walking: It tells them:
        1.Subtle weakness (possible brain lesions/brain stem lesions)
        2. Trouble walking on toes (spacticity).
        3. Trouble walking on heels (subtle weakness in one or the other leg) (possible brain/brainstem lesion).
        4. Wobbly walk-problems with balance and depending on how you react to that balance it can mean ears versus CNS.

        Hop on one foot:
        1. Brings out subtle weakness.
        2. Tells them things about your balance and about possible lesions.

        Bring your arms straight out in front of you:
        The are looking for:
        1. Spacticity (do your fingers stay curled or can they stretch out)
        2. Do your arms come up and stop at a certain point or keep going-overshoot.
        3. Do you have pronator drift-weakness.

        Finger-nose-finger test
        This test they are looking for:
        1. Subtle intention tremor in your responses.
        2. Overshoot
        3. Coordination

        Eye exam:
        Most neurologist will look into your eye at the optic nerve.
        1. For inflammation
        2. Also look at the eye for primary position nystagmus. Some can see this without examining the eye, the may just look at you for nystagmus.

        Eye movement:
        What they are looking for:
        1. Eye tracking: Jerky movements (saccades)
        2. Nystagmus
        3. Dysconjugate eye tracking.

        Open you mouth/tounge/teeth etc.
        1. Open mouth: They look for your mouth opening symmetrical. If it doesn't, it may be a 5th or 7th nerve palsy.
        2. Tongue: Examined for position-if to the right or left, think brainstem lesion, if atrophied think same or myasthenia, if fasciculating think neuromusclular disorder.
        3. Have you run your tongue around your teeth. If smooth, no problem. If saccadic, then possible brainstem lesion.

        Reflexes:
        Hyperreflexive: spacticity
        Hyporeflexive: weakness, or possibly neuromusclular disorder like ALS.

        Babinski reflex:
        A specific reflex that is only normal in babies, but is seen as neurological damage in adults.
        The bottom of the foot is scraped with the end of a neurological hammer from bottom to top along just under the toe line.

        Positive reflex: The big toe with extend toward the sky, the rest of the toes will fan out. The leg will also be stiff directly after this reflex and difficult to maneuver. This is a sign of CNS damage and most all MS patients have this due to lesions in their brain. A physician can tell where a lesion is sometimes by where on the foot the toes most react.

        Normal reflex; Downgoing toes. No CNS damage.

        No effect: Normal variant.

        As you can see, even though a neurologist spends little time with you, they can tell a great deal from your exam. These guys are highly trained. CNS lesions don't often hide and are very localizing.

        That said, if you feel like you need an MRI, go see another neurologist...start over.

        Good luck, hope you feel better soon!
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Thanks 22cyclist! You just posted my entire neuro visit (aka "The Sobriety Test) except for shining that light in my eye to see pupil response (my left pupil has been non-responsive since 2005).

          I never thought to ask what those tests are actually for so thanks so much for sharing this interesting knowledge!
          Jen
          RRMS 2005, Copaxone since 2007
          "I hope to be the person my dog thinks I am."

          Comment


            #6
            Hi

            I understand having all these weird symptoms and wanting to what is causing them!

            Thank you, Cyclist for explaining the tests. I don't think I did so hot on some of them. My neurologist didn't say one way or the other what he thought about the results. I know I was shocked when I whacked myself in the forehead doing the finger nose test with my right hand. :/

            Hang in there, OP. I believe the answers will come to all of us in time. I definitely get it, though.

            Hugs,
            Minnie

            Comment


              #7
              I saw my general doctor today for my vertigo, dizziness, and nausea and she told me that she did a thorough neurological exam on me but that if I am still worried about having MS that she will send me to a neurologist. She said that she doesn't want to put me "through the ringer" with all of the MS tests yet since they would involve MRIs and a spinal tap. But, I am already put through the ringer everyday thinking that I have MS... so I will go see one soon. I decided that I'm going to go see the Ear, Nose, and Throat doctor that she still wants me to see about my vertigo and dizziness and I will tell the ENT Dr everything and see if the ENT Dr thinks it could be MS. Do you guys think that is a good idea?

              Comment


                #8
                I think you've got a good plan there - the ENT doctor can either clear you or maybe find a good reason for all the nausea and dizzyness. Then go on from there.

                Comment


                  #9
                  Dear ScaredandConfused,,,,,,,

                  Sometimes insisting you have disease ABC &/or XYZ turns the doctors OFF. I would tend to avoid that, unless one of your other/previous doctors thought it might be MS. For me it was a new eye doc in 2009 who for the first time since I developed it in 1964 noted my diplopia was neuro-muscular and possible MS. Before then I had no idea what MS even was.

                  Doctors and many other trained pros do not like being told how to do their job, even if/when you are right and they are wrong or lazy. Tread very carefully here.

                  I made a neuro apt as recommended by my eye doc and my fam doc almost went into panic mode and called me in right away for a "it fits" MS pep talk. The rest is history, and nearly 5 decades of dots got connected and questions finally got answered.

                  Along the way I simply learned to adapt to my limitations as they came.

                  Gomer Sir Falls-a-lot

                  Comment


                    #10
                    Originally posted by Cat Mom View Post
                    Thanks 22cyclist! You just posted my entire neuro visit (aka "The Sobriety Test) except for shining that light in my eye to see pupil response (my left pupil has been non-responsive since 2005).

                    I never thought to ask what those tests are actually for so thanks so much for sharing this interesting knowledge!
                    Jen
                    They are swinging the light between the two eyes to check pupillary response. This gives them an idea about optic nerve damage new and old. They swing the light like a pendulum in a dimly lit room to check for it.

                    You obviously have damage. Me too, only in both eyes thus no difference between the two. Mine has to be seen on MRI.
                    Disabled RN with MS for 14 years
                    SPMS EDSS 7.5 Wheelchair (but a racing one)
                    Tysabri

                    Comment


                      #11
                      Originally posted by ScaredandConfused View Post
                      I saw my general doctor today for my vertigo, dizziness, and nausea and she told me that she did a thorough neurological exam on me but that if I am still worried about having MS that she will send me to a neurologist. She said that she doesn't want to put me "through the ringer" with all of the MS tests yet since they would involve MRIs and a spinal tap. But, I am already put through the ringer everyday thinking that I have MS... so I will go see one soon. I decided that I'm going to go see the Ear, Nose, and Throat doctor that she still wants me to see about my vertigo and dizziness and I will tell the ENT Dr everything and see if the ENT Dr thinks it could be MS. Do you guys think that is a good idea?
                      Try the ENT doc. You may have enough fluid in you inner ear to cause you to have these problems. Sometimes you can even have something called mastoiditis that will cause tingling etc. It is worth a try.

                      What you are describing does not sound like MS per se. It does sound more like inner ear. Try that route first. They will look at your eye tracking to make sure it is not central nervous system, so don't feel dismissed.

                      No worries...OK?

                      It is a process. The good thing is your neurological testing was normal and you might have something that can be treated. These are all good things!

                      Let us know how it goes.
                      Disabled RN with MS for 14 years
                      SPMS EDSS 7.5 Wheelchair (but a racing one)
                      Tysabri

                      Comment


                        #12
                        Thanks everyone and 22 cyclist. You are helping me relax during this time. I don't know if it's my worries or what but the tingling and prickling zappy sensations have come back again. I feel them mostly in my fingers, hands, arms, and in the legs too. It really makes me scared. I brought it up with my doctor but she still said that I have a perfect neurological exam but that if I wanted to do the MS testing she will refer me to one of her favorite neurologists. I will still try the route of going to the ENT first and explaining everything to him. In the mean time though, I can't help but think why on earth anxiety or stressing could cause these zapping prickling paresthesia sensations. I tried looking it up but it really doesn't indicate that anxiety can cause this... It honestly makes me convinced that I do have MS but I know I have to wait until I get into my appointment. Sorry I just have to vent.

                        Comment


                          #13
                          I forgot to mention that I did have a lumbar spine MRI done about 4 months ago. The pelvic pain that I had caused sciatica. I actually had to have a lumbar spine MRI during that time to make sure it wasn't cauda equina (it was normal). I don't really have sciatica pain anymore but anytime I touch the sciatica area, I feel a buzzing and tingly feeling all over it. So I guess that is another symptom of mine.

                          Comment


                            #14
                            I actually just went for a 3 day infusion over paresthesia this week and woke up today with even more tingling and crampy back/right arm. I made a call to my neuro (I know, why is it always at 4am on Sunday morning that these things happen?). I have started to feel like since I was diagnosed while he has been good still left me with even more questions than what I should have had? I just don't know.

                            I am still trying to figure out how when I was diagnosed in March - things were still semi-ok and lately things just seem to have gone off kilter.
                            “You don't love someone for their looks, or their clothes, or for their fancy car but because they sing a song only you can hear.”
                            ― Oscar Wilde

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