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22 Years Old, Suffering Without Answers or a Diagnosis. Is it MS?

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    22 Years Old, Suffering Without Answers or a Diagnosis. Is it MS?

    Hello, I am Brandon. Presently, I am 22, with a birthday coming up in July. I am also married. Until recently, life was going great, for the most part. Now, I am struggling each day, with no name to attribute my symptoms to. Is it MS? It's possible, but my MRIs suggest otherwise.

    Medical History

    • Frequent ear infections and strep throat as a child into teenage years
    • Chief complaint over the years was leg pain, which was attributed to "growing pains"
    • Misdiagnosed by the ER three times in 2013 with sphenoid sinusitis. For a month, I had a severe, persistent headache that no medication eased. I felt very fatigued. The ER tried vicodin, percocet, dilaudid, and morphine, but none helped. They made me drowsy, but I remained awake and alert the entire time. This impacted me for an entire month, and then one day I woke up and the headache, fatigue, etc. were gone. Shortly after, I saw an ENT, who said he thinks I had viral meningitis, not sphenoid sinusitis, based on the CT scan he looked at from the hospital. Nothing ever happened after that.
    • I have had weak quad muscles since my early teens. Due to the weakness, my knee cap doesn't track properly. Physical therapy has helped some in the past, but not completely. The last time I did PT was in the Spring of 2016
    • Abdominal discomfort in 2015, small gallstones discovered and gallbladder removed
    • The last time I had an ear infection was in Dec 2016 or Jan 2017
    • Suffer from ADD, anxiety, and dysthymia (all diagnosed around the age of 12 or 13)
    • I once broke my pinky toe, but that's the only bone
    • I've had persistent headaches over the years, as well as 2-3 migraines per year


    Current Medications

    • Vyvanse 40mg, 1-2x daily (depending on the time I wake up and if I remember to take it in the early afternoon)
    • Pristiq 50mg, 1x daily at night
    • Vitamin D 5000 IU 1x daily


    Known / Present Issues

    • Chronic Migraines (since Feb 2018)
    • Dysthymia, ADD, and Anxiety (since teenage years)
    • Vitamin D Deficiency (since March 2018)
    • Sinus Infection (currently taking a course of antibiotics, on day 4 or 5 now)


    Current Symptoms

    • Daily headaches with varying degrees of intensity
    • Loss of sensation in and around the pinky finger on both hands
    • Extreme fatigue and tiredness after only a short time of waking up
    • Difficulty falling asleep, primarily due to discomfort / pain
    • Pain is present during the day but seems to be worse at nighttime
    • Unable to tolerate heat. It makes me feel worse. I use to love hot baths, and while I still take baths, they make me feel worse. On the flip side, sometimes I feel too cold. Finding a temperature where I am comfortable is difficult. It didn't occur to me until recently, but I have always been sensitive to the heat. I keep the thermostat at 68 during the day and set it to 62/63 at night. In the vehicle, I constantly adjust the thermostat and go from being too hot, to being too cold.
    • Pain in fingers, hands, wrists, upper arms, and shoulders. Pain in lower legs as well
    • Pain in my legs is worsened by exertion, walking exacerbates the symptoms in my legs


    Recent Vitals

    • BP is pretty normal, I've had 120/80 110/70, and 90/60 (in the AM)
    • Normal heartbeat, oxygen level
    • Weight is around 100lbs. In Dec 2017, my weight was 114-115 lbs. I lost all of my weight in the month of February, very rapidly. I am no longer losing weight, nor am I gaining weight, despite increasing my food intake.


    Initially, the symptoms began to appear in the early part of February 2018. I started noticing weakness / loss of sensation in my hands and I thought I had carpal tunnel. From there, it got worse and worse, so I saw my PCP in the early part of March. She suspected hyperthyroidism, but all of my blood-work came back normal. She said to give it the weekend and contact her Monday if things haven't improved. Well, they sure didn't! I fell to the ground and couldn't walk. My legs hurt so bad, and they felt very, very weak. I could still feel my legs, however. I went to the ER, and they were of no help and said I wasn't having a stroke or heart attack, so to go home and see my PCP the next day. At this point in time, I've seen two neurologists, one who ordered an MRI of the brain but quickly diagnosed me with fibromyalgia, functional neurological symptoms disorder with abnormal gait, and chronic migraines. A second neurologist disagreed entirely and ordered MRIs of my spine, but I never went back to see him. I had the MRIs done, but I felt uncomfortable with him and his reviews online were very poor. In any case, my first neurologist saw the MRIs and they were normal, too. Last week, I saw a rheumatologist, who evaluated me and noted that he doesn't suspect anything rheumatological and if he had to guess, I have some kind of primary neurological disease. He ruled out fibromyalgia and believes something else is going on. He also mentioned something about my peripheral nerves. In any case, he told me to see a "real" neurologist and provided the names of a few. He wants me to get an ECG/ENG and noted that my symptoms are quite remarkable. I see one this Thursday.

    Test Results

    Vitamin B12 563 NORMAL
    Folate (Folic Acid), Serum 15.6 NORMAL
    Copper, Serum 84 NORMAL
    Vitamin D, 25-Hydroxy 13.4 LOW
    Lyme IgG/IgM Ab <0.91 Negative
    Methylmalonic Acid, Serum 241 NORMAL


    Iron, Serum 96 NORMAL
    Iron Bind.Cap.(TIBC) 369 NORMAL
    UIBC 273 NORMAL
    Iron Saturation 26 NORMAL
    T4,Free(Direct) 1.46 NORMAL
    Folate (Folic Acid), Serum 14.0 NORMAL
    TSH 1.190 NORMAL
    Ferritin, Serum 161 NORMAL


    WBC 7.6 NORMAL
    RBC 5.81 HIGH
    Hemoglobin 17.2 NORMAL
    Hematocrit 49.4 NORMAL
    MCV 85 NORMAL
    MCH 29.6 NORMAL
    MCHC 34.8 NORMAL
    Neutrophils 71 NORMAL
    Immature Granulocytes 0 NORMAL
    Lymphs 23 NORMAL
    Monocytes 6 NORMAL
    Eos 0 NORMAL
    Basos 0 NORMAL
    Platelets 350 NORMAL
    Neutrophils (Absolute) 5.3 NORMAL
    Immature Grans (Abs) 0.0 NORMAL
    Lymphs (Absolute) 1.8 NORMAL
    Monocytes(Absolute) 0. 5NORMAL
    Eos (Absolute) 0.0 NORMAL
    Baso (Absolute) 0.0 NORMAL
    RDW 13.0 NORMAL
    Sedimentation Rate-Westergren 2 NORMAL
    C-Reactive Protein, Quant 0.3 NORMAL
    Thyroid Peroxidase (TPO) Ab 13 NORMAL
    Thyroglobulin Antibody <1.0 Non-Reactive
    HIV Screen 4th Generation wRfx Non Reactive


    Calcium, Serum 10.2 NORMAL
    Glucose, Serum 94 NORMAL
    BUN 7 NORMAL
    Protein, Total, Serum 7.8 NORMAL
    Albumin, Serum 5.6 HIGH
    **Verified by repeat analysis**


    Bilirubin, Total 0.4 NORMAL
    Alkaline Phosphatase, S 111 NORMAL
    AST (SGOT) 23 NORMAL
    Potassium, Serum 4.4 NORMAL
    Sodium, Serum 143 NORMAL
    Chloride, Serum 99 NORMAL
    Creatinine, Serum 0.53 LOW
    ALT (SGPT) 22 NORMAL
    Carbon Dioxide, Total 25 NORMAL
    BUN/Creatinine Ratio 13 NORMAL
    Globulin, Total 2.2 NORMAL
    A/G Ratio 2.5 HIGH
    eGFR If NonAfricn Am 150 NORMAL
    eGFR If Africn Am 174 NORMAL

    MRI Brain

    History: 22-year-old male with history of bilateral hand numbness, limited walking tolerance, weight loss.

    TECHNIQUE: Multi planar multisequence MRI of the brain without contrast.

    COMPARISON: None.

    FINDINGS:

    No intra-axial or extra-axial hemorrhage, fluid collection, mass or mass effect in the brain. Normal signal intensity of the brain. Normal size of the cerebral sulci and ventricles. No restricted diffusion in the brain. The basal cisterns are patent.
    Major intracranial vascular flow voids are maintained.

    There is a small mucous retention cyst in the right maxillary sinus. Bilateral remainder of sinuses are normal. Bilateral orbits are normal. Bilateral mastoid air cells are clear.

    Cervicomedullary junction is normal. Sella is unremarkable.







    MRI C-Spine / T-Spine

    Clinical history: Difficulty walking

    TECHNIQUE: Noncontrast MRI sequences through the cervical and through the thoracic spine.

    FINDINGS: The cervical and thoracic segments of the spinal cord appear normal in course, caliber and signal. The conus ends without impingement at about the level of the L1-L2 interspace.

    At no level is there significant spondylotic disease, and at no level is there central canal or neural foraminal narrowing. There is slightly prominent dorsal epidural fat extending from about the level down to about the T9-T10 level, but this does not
    cause significant narrowing of the central canal.

    There are small Schmorl's nodes deforming thoracic spinal vertebral body endplates from the T5 down through the T12 levels, but overall these vertebral bodies demonstrate normal height, and the intervertebral discs demonstrate normal signal.






    Any ideas what may be going on? Anyone here have a similar experience? I am at a loss.

    #2
    Hi btks95 and welcome!

    Sorry you are experiencing some troublesome symptoms, but no one here can tell you if you have MS or not. Actually, many times it's hard to get a diagnosis of MS as many other conditions need to ruled out first.
    https://www.nationalmssociety.org/Sy...ns-to-Rule-Out


    Even then, one must go through complete diagnostic testing which may take some time.
    https://www.nationalmssociety.org/Sy.../Diagnosing-MS

    After reading your summary, the only suggestion I may have is to get your Vit. D3 levels up. Your level is extremely low! The optimal levels should be around 50-70mg/nl

    You may want to seek help with a neurologist for further testing even though your MRI is unremarkable. Sorry you are having a tough time.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Well, I saw a neurologist on Thursday. Still no answers.

      ECG/ENG was done with normal results.

      Neurologist did note my optical nerve has scarring. This is new as far as I know. The MRI did not show this? I saw an ophatmatologist a year ago and everything was fine then -- this was to be cleared for PRK.

      My other neurologist was stumped when I told him about the scarring.

      Overall, I am much better now... symptoms are stable and no changes. I have pain in my hands and fingers, upper arms, and shoulders. The best way to describe the pain is growing pains. I was told that a lot as a child for my legs. Pain is worse at night, I started taking ZZZquil to sleep. If I get less sleep, I hurt more the next day. Less sensation in pinky fingers.

      The doctors have no answers. What now?

      Comment


        #4
        Originally posted by btks95 View Post
        Neurologist did note my optical nerve has scarring. This is new as far as I know. The MRI did not show this? I saw an ophatmatologist a year ago and everything was fine then -- this was to be cleared for PRK.

        My other neurologist was stumped when I told him about the scarring.
        I would suggest seeing your Ophthalmologist and getting some clarification about what the Neurologist told you. A Neurologist isn't the Dr. to evaluate your eyes or vision. My Neurologist's have always referred me to an Ophthalmologist/Neuro-Ophthalmologist for vision issues.

        Vitamin D, 25-Hydroxy 13.4 LOW
        This needs to be increased into the range of 50-70.

        Currently your MRIs do not indicate MS as the cause for your symptoms. There is no symptom(s) that is exclusive to this disease.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          Sorry you are experiencing this but glad you are somewhat better. From what you wrote, there doesn't seem to be any clinical support for MS presently. Agree with the suggestions given:. See an eye specialist and work on your vitamin D.

          You did mention anxiety. Do what you can to make sure this is under control. No matter the path that your health leads you, MS or not, you need this. Anxiety can cause physical symptoms and sometimes, doctors may dismiss if they feel anxiety involved. I am not saying that is what is going on with you, just that it can complicated medical issues.

          Lots of luck.
          Kathy
          DX 01/06, currently on Tysabri

          Comment

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