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  • myizzysgigi

    I have been suffering from a multitude of different symptoms for the past 2.5-3 years, off and on lasting from a few days to weeks and months. I have been to see my PCP, which he referred me to Neurology. I have seen 2 different Neurologist; the first told me I have frozen shoulder syndrome(which there is nothing wrong with my shoulders, except muscle pain), the second told me it was a B-12 deficiency( normal, depending on lab of course is 200-950, my levels were 570). I have had 2 Brain MRI's a year apart, it showed some change but not significant enough for a diagnosis. My symptoms range from EXTREME fatigue to the electrical current I feel running through my body from head to toe 24/7, has even woke me up a few times. I have a strange itching feeling, all over sometimes so bad it feels as if it starts in the bone. I have to wake up 30 minutes early Mon-Fri so that I can get ready for work, because my arms are completely numb, not as if I slept on them for a long period of time but numb( there have been times I have to look down to make sure they are still there so numb). I feel short of breath most of the time, like something is squeezing my chest around the lower part of my lungs/diaphragm area... .The list goes on and on... this is by far only a few things. I feel as if no one believes me, especially doctors!! I feel as if I am not taken seriously! I feel as if the doctors think I'm only there for medication, because I hurt so badly. Many, Many days I hurt so badly it hurts to even touch the hair on my head. I KNOW SOMETHING IS WRONG WITH ME, AND I JUST WANT TO KNOW WHAT IT IS!!! 

     
  • anywhereoutofthisworld
    Hello there, I was diagnosed with Multiple sclerosis in late July of this year after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. Your symptoms do sound a lot like MS, however MS has the symptoms of other illnesses as well. I'd suggest some blood work to rule out, Lymes disease for example. I would also suggest a spinal tap but that's completely up to your neurologist. I will keep you in my prayers. Here's a list of common MS symptoms.

    Speech and voice disorders
    ----------------------------------------
    Up to 40% of people with MS experience problems with their voice or speech.
    One possible problem is dysarthria, a motor speech problem that manifests as slurring, poor articulation of words, and speaking too loudly or too softly. Another possibility is dysphonia, a change in voice quality, such as sounding hoarse or nasal.

    Fatigue
    ----------------------------------------
    Some 80% of people with MS will experience fatigue at one point or another, but fatigue can have many causes. Some people experience “MS lassitude,” a very severe fatigue that occurs daily that tends to get worse as the day wears on.

    Numbness
    ---------------------------
    (or a lack of sensation in various parts of the body) is often one of the first symptoms to bring a person with MS to the doctor. Numbness can occur in the face, the body, or the arms and legs, and can interfere with walking, holding on to objects, and even chewing, if the numbness affects the face.
    Sometimes the feeling—or lack thereof—progresses over hours or days, but it usually subsides on its own.

    Vision problems
    ---------------------------------
    Like numbness, vision problems are one of the most common early symptoms prompting a person to visit the doctor. The problem can manifest as double vision, eye pain, blurred vision, or a scotoma (it looks like a hole in your vision).


    Bladder Dysfunction
    -------------------------------
    Bladder problems in people with MS can manifest in two, seemingly opposite ways. Some people have difficulty emptying their bladder. That means urine stays too long in the bladder, leading to infection, discomfort, and a distended bladder. Others can't keep the urine in, resulting in leakage and urgent frequent bathroom trips.

    Constipation/ IBS
    --------------------------------
    The most common bowel problem related to MS is constipation or also irritable bowel syndrome.

    Dizziness and Vertigo
    --------------------------
    The good news is that the symptoms of dizziness and vertigo often do go away and, for others, common drugs used to treat dizziness and vertigo in otherwise healthy people can be effective.

    Sexual Dysfunction
    ----------------------------
    There are three types of sexual problems related to MS, and the first is direct neurological damage to the nervous system. For women, that means loss of sensation, loss of vaginal lubrication, and an inability to achieve orgasm. For men, it can mean sensory changes as well as difficulty getting and maintaining an erection and difficulty reaching orgasm.
    In addition, people with MS might feel reticent about sex because they’re tired or are worried about bladder control. Some MS medications can also affect sexual function.

    Depression
    --------------------------
    Not surprisingly, depression is common among people with MS. Changes in the immune system can contribute to depression, as can biochemical changes in the brain.

    Cognitive Dysfunction
    --------------------------------------
    Cognitive dysfunction affects upwards of 60% of people with MS. The good news is that only specific areas are affected. This could be recent or “working” memory or the speed at which a person is able to process information. Or a person may have trouble focusing or multi-tasking. Once these problems start, they often don’t go away, but they do progress slowly.

    Anxiety
    --------------------------------
    This is the poor second cousin to depression. That’s because depression gets all the attention, though anxiety can be equally debilitating. Not only are there organic changes in the brain that result in anxiety, but the ongoing, uncertain nature of MS can be nerve-wracking.
    MS can also involve mood swings and irritability, although the irritability may be a consequence of depression.

    Emotional changes
    -------------------------------
    About 10% of people with MS may experience “pseudobulbar affect” (PBA), a neurologic change that usually occurs in tandem with cognitive changes. Here, the expression of a mood or feeling is disconnected from how a person’s actually feeling so a person may have uncontrolled bouts of crying when they’re not actually sad or they may laugh hysterically at inappropriate times.

    Pain
    ----------------------------------------
    The pain is often the direct result of nerves damaged by the disease. If this is the case, the person may feel severe burning sensations in their legs, feet or hands, or might imagine a knife is stabbing the side of his or her face because the nerves on that side are inflamed.

    Spasticity
    ---------------------
    Spasticity can involve both stiffness as well as involuntary muscle contractions. As a symptom of MS, it’s most common in the legs and may manifest as a mild feeling of tightness in the muscles or as more severe pain.

    Balance/ Coordination Problems
    --------------------------------
    People may report they feel suddenly weak in one limb or they may find objects slipping easily out of their hands. If there’s damage to the cerebellum, the part of the brain that controls balance, people might also be unsteady on their feet and prone to falling.

    Tingling
    --------------------------
    Tingling is related to numbness and may feel like your arm, fingers, or toes are falling asleep, yet never quite waking up. Like other MS symptoms, this is a result of damaged nerves sending mixed signals to the different parts of the body. People may also experience something called the “MS hug.” It feels like somebody is grabbing them very tightly around the midsection, but it’s not muscular.
     
  • capitolcarol
    Oh my goodness, I experience everything you have listed in all your categories.  It is very rough to see all spelled out though.  I have been trying to conquer some of these, but not nearly half probably.  More things to contemplate in the New Year.  Thanks for all the information.  
  • bubbadog66
    I remember not so long ago knowing something is wrong with me...pushing myself like a healthy normal person does....ending up in the ER or @ my PCP (I've had several the past 10 plus years) and just being told mostly in a PC way that my "discomforts" are all in my head. Frustrating place to say the least!! I knew something was wrong which made me feel "off" for years before my diagnosis in Dec 2016. My (2nd & still my current) neurologist validated my belief with his findings on my MRI's this past year. I am on Tecfidera currently and still attempting to wrap my head around MY MS diagnosis....as i understand it being newly diagnosed is a "process" of getting from "here" to "there" whatever that should look like. Acceptance over the powerlessness is key for feeling serenity and sanity in an uncertain world.

    Had i reached out like you and asked for help in my pre-diagnosed days those days prior to that would have been less intense. I would've had the experience of others to draw on and cope with those days better. Hindsight is 20/20!!

    It is ok to feel anxious and insane TODAY being in your shoes. Bottom line is MS s@#ks and many other chronic conditions mimic it. The importance of diagnosis is key to solutions for better health & personal wellness. If i were in your shoes today i would just act as if i had MS. Start making my life changes now as i asertively "fight" for the "real" answers to my health challenges. Physical, mental, emotional and spiritual parts of my being make up my whole being. MS, at least my MS, affects all four realms of my being so i NEED to treat them ALL!

    I have found this sight and these discussions i've participated in most helpful with the mental, emotional and spiritual aspects of my MS. In turn i gain knowledge of what i might expect and a huge validation within my physical realm. I feel less overwhelmed and alone. I feel like i am heard!!

    I hear you loud and clear...for me those days were cunning, baffling and full of uncertainty and powerlessness. Thx for your post, i found it most helpful TODAY in my life to remember when...to remember that hopelessness. Just think....in 365 days from now your current dillemas will be unimportant...you will be facing an entirely new set of "huge life altering" and so important that life might end because of it challenges. Baby steps & forward motion daily as you're learning to be kind to yourself....we can help you with that if you continue to let us!
  • MS_Navigators
    Hi there!

    That is so frustrating- I wish I had some sage words of advice, but all you can really do is continue to be such a strong advocate for yourself, and perhaps continue with other medical opinions.  Though numbness and tingling can be MS symptoms, there are diagnostic criteria that has to be met, as you've found out.  I sure hope you get some answers soon- keep fighting!

    MS Navigator Jess
  • couragewarrior
    Don’t ever give up on yourself. I have a very complicated medical history and I’ve lost count on how many doctors have told me I’m faking it for attention. I’m crazy(yeah that’s my favorite one) to just refusing to believe me since I don’t fit the model. Well from my own experience their isn’t a right way or wrong way to feel(Physically or emotionally). I also know that medical tests don’t always prove you have something wrong with you. For me a few years back I knew something was majorly wrong with me that wasn’t MS related and my labs said no your healthy. Well after awhile I got my other autoimmune diseases diagnosed but not from my labs. My doctors diagnosed me from my symptoms and about 10 months after the initial labs I then started showing positive labs. If your not satisfied with your doctors attitude understanding quality care or doesn’t listen to you or brushes you off change your doctors. It’s not wrong to change doctors. I have loved several of my specialists but for many reasons I stopped receiving the quality of care I deserve so I switched doctors. And if someone tells you that a doctor they see is wonderful but you don’t please understand that each of us are individuals who and youor may not click with a family or friends doctor suggestion and no one is wrong in feeling the way they do. Some,people like quick short appointments and just the basic information or like me I want to know it all good or  bad and I need the TLC kind of doctors. I dont know if this helps or not so,sorry if it doesn’t but your not crazy or alone even when it feels so hopeless. Don’t ever give up amd most importantly be your own advocate cause no one knows your body’s aches and pains like you do.
    Good luck, hang in there and hugs.
    Anne
  • couragewarrior
    Also I deal with the itching all over my body. It isn’t much fun but it has to do with your body and the diseases. Use cool water and a good lotion. I use either Sarna or Cerave 
    lotions. Works well
  • capitolcarol
     Myizzygigi

    Hi, you should definitely go to another neurologist.  You have to keep trying with these neurologist, who is just right for you, understands you, and you can be comfortable around.  A lot of us have had to go through different neurologist. You really have to stand up for yourself and find someone that will help you.  Please make an appointment soon and get back to us.
  • jennifer_m
    Sad to say, sometimes it takes a lot of determination and stubborness to finally come to a conclusion as to, literally, what's eating you.  Me personally, over the span of 10 years it took three episodes of losing all strength in my legs, my legs going numb starting with my feet, countless nights of bad sleep, and a PCP + a podiatrist+ a neurologist+ going to the e.r. and getting transferred to a hospital that had a bigger neurology department to FINALLY get a diagnosis.
    Long story short I was determined, in spite of doctors each saying the same thing as to what was wrong with me: I don't know.  If deep in your gut you feel something is amiss then don't give up.  In that fateful e.r. visit (ironically 2 years ago today) I firmly decided that come what may I wanted answers and so did my loving and compassionate husband.  He hated seeing me hurting and we both wanted to know why.  At the hospital I was transferred to I had the chance to get in with a neurologist that specialized in MS and he's been awesome.  Don't give up!!  If MS is the answer, we here on Planet MS will be ready with open arms and big shoulders to lean on for anything.  My prayers are with you, and hope you have a happy Christmas.
  • gabrielle519
    Hello,
    I am so sorry you have to go through this. I saw a neurologist who diagnosed me but then as my symptoms continued to worsen and I was on steroids every 3-6 months he said I was stressed and depressed. Thank God my insurance changed and I ended up with a new doctor who immediately said well your MRI of your spine what did that show. My mother and I looked at each other puzzled? Like what MRI of my spine. So thats what he did and it apparently was bad. The  day he saw the results he sent me to a center that specifcally specialized with MS. I then got the best treatment.

    My advice to you is if there is a center that specializes with MS patients near you go see them. Don't ever think that your symptoms aren't real because they very much are real. Sometimes you will have to fight and get a lot of opinions until on can give you answers. This isn't fair to you but unfortunately thats MS world. Good luck!
  • shiloh
    Have you been tested for MS? You have a lot of the symtoms that I do. Find a neurologist that specializes in MS. He will be the one to help you!!!

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