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  • DR2018
    I was given a "pre" diagnosis of MS. I havent seen much info on a pre diagnosis. Has anyone else been given this? 
    I went to my lasty appointment telling my doc I was ready to stop the search. Tests were all normal. Except for the MRI. She said the thing that threw them off, the gp and neuro, was the lesions were on one part of my brain. They werent scattered. They will be checking on me every so often. I will be taking baclofen. The baclofen really helps. Especially when I had my first bladder symptoms a month ago. So, I am not really sure where to go from here? A year ago I changed my diet dramatically. A vast majority of my food is now organic. After doing this, the intensity and how often my symptoms came and went lessoned. Not by much, but it helps. My husband and kids, aged 14 and 23, have all been supportive. But I dont think they know or understand what truly needs to be done to keep me healthy. I am just a bit confused about a pre diagnosis. Im not really sure. A bit apprehensive? Has anyone else gotten a pre diagnosis?
  • abreua
    Never heard of a pre diagnosis before. Sometimes a spinal tap is done as a  definitive test. I wouldn't let the doctors get away with this. If you have MS, it needs to be verified and treated. 
  • cjtmn
    First, I’m sorry you are going through this. There is a lot to learn & understand, and it sounds like you have a good medical team to work with.

    I am guess that “pre-diagnosis” is a term to mean “Clinically Isolated Syndrome” or CIS. You will find more looking this up on the National MS Society website (I’ve never heard pre-diagnosis).

    You may have a few questions for your neurologist once you have read more about CIS and MS. Write them down and make sure to get answers you are happy with. If your neurologist doesn’t specialize in MS, you may want to take your MRIs to one who does.

    Wishing you all the best.
    Cheryl 


     
  • DR2018
    Doc said beginning stages. The mri really threw them off. I first had tested positive on one test for lyme, but not another. Then they did a ct, there was a lesion or tumor on my pituitary.  The doc started talking about a neuro surgeon and an mri to see exactly where it was and how big. It didn't show on the mris. But the several foci did. But only in one part. She has been giving me baclofen for the last several months. I hate meds, they knock me down. But this one seems OK and does the job. I'm just really sensitive to meds. So I get the lowest dose. It really helps with the cramps, spasms, the tightness, bladder, intestines, the tingling pins and needles, numbness, helps with my balance, but not so much the headaches. When I take it, my left leg seems to be better too. The left leg has really given me trouble. But, I am not going to pursue it any further.  No spinal fluid or blood.  They can take images to keep track of the foci, but that's it. I was becoming emotionally, physically, and mentally just exhausted. The time and money was just not worth it either. So, I have decided to just take the diagnosis. If it changes it changes. But I just don't know where to go from here. I'm kinda in between. I would like to research it a bit more. I feel I should being doing more on my part. But I don't know what. I feel it's a good  diagnosis, I accept it. I feel like I need to do more to keep my symptoms under control as well. 
    I'm hoping that can clarify it a bit. 
  • capitolcarol

    cjtmn,
    I never heard of pre-diagnosis of MS.  I think she should definitely get a second opinion.  As always, write down a list of info and questions for a new neurologist and hopefully it will be a neurologist that specializes in MS.  And take notes of what transpired during this meeting with new neurologist.  
     
  • anywhereoutofthisworld
    I was diagnosed with Multiple sclerosis in late July of 2017 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. See the following link to view guidelines for MS diagnosis: Click to See Link For Guidelines. I completely understand you're frusterated with this prediagnosis and wish to stop further investigating because it's draining. But I fear you could do more harm then good in the long run not at least seeking more definitive answers. This prediagnosis most certainly lacks clarity and that's so dangerous (you only have one life to live). I would suggest you speak to an actual neurologist and bring with you a list of any symptoms you currently are experiencing (or have in the past) that you think could be MS related. He may suggest another MRI (with contrast perhaps), possibly blood work to rule out other stuff like Lymes disease (which it sounds like you have already tested for this) and if enough suspicion is perceived by him he may order a spinal tap (the spinal tap is not near as bad as it sounds, trust me). That's what the path to diagnosis was for me. I also prior to the spinal tap, had a c-spine MRI, which ended up leading me to finding out I have Cervical Spinal Stenosis, on top of MS. For the stenosis, I see a neurosurgeon & I attend physical therapy. I also see a mental health therapist for depression & anxiety. Here is a list of some common & not so common symptoms to look for when you suspect you may have actual MS.

    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.
  • gabrielle519
    DR2018,

    I have never heard of pre diagnosis. You can reach out to the MS society maybe find someone that specializes with MS because you want treatment to prevent the progression of the disease. Plus the uncertainty really isn't fair to you. If need be I would get a second opinion. I had a terrible neurolgoist at first that diagnosed me but basically stress and depression were making my symptoms worse. Later I found out that my disease was progressing because the medication wasn't working it had nothing to do with stress and depression. Anyway I wish the best of luck. Gabrielle
  • awilliams84
    Back in 2009 I had had vertigo really bad for about a week. They ran some blood work and decided I had hypothyroidism. Then I had numbness and tingling. I had just tried the gym for the first time so I thought maybe I pinched a nerve. The doctor referred me to a neuologist. I had one lesion on my spine and some on my brain but she didn't think they were consistant with MS. I had a spinal tap and it showed nothing of significance. She told me it could be MS but she wan't sure to come back in a year for more scans.

    I was in college with a huge amount of stress and the growing medical bills that I had weren't helping! Shortly after I moved home, graduated and lost a significant amount of weight. I didn't have anymore noticable symptoms (I now know I did have symptoms but didn't realize they coorelated to MS, or anything really) so I assumed my unhealthy lifesyle was the cause of my symptoms and never went back to the neurologist.

    In May 2017 I started having the exact same numbness and tingling and knew immideately I needed to see a neurologist. I did and they confirmed I in fact did have MS. 

    I think you should definitely get a spinal tap if that hasn't been done yet and listen to your body. Get other opinions, seek a neuologist that specializes in MS and be your best advocate. Good luck!
  • DR2018
    Ive already been to 2 neurologists. I dont want to go to anymore. The new neurologist is lucky I am letting her keep tabs on it and do imaging on occassion. The first neuro cracked a few jokes, poked my feet with a needle, tested my strength in my hands and told me all seems normal and strongly recommended an mri. I was in tears. I thought the exam was a joke. Told the gp. She ordered the mri. Thats when the mri showed the foci and proved the ct was wrong. She referred me to another neuro. The neuoro hit my knee a couple times, asked me some questions. Said it sounds like MS. She hadnt seen the mri yet. She was supposed to have them before my appointment. Ugh! I had my personal mri copies in my truck. Let her look at them. She said they looked remarkable. Went to my gp. She said she received a letter from the neuro stating it was the beginning stages of MS. So the gp gave me a "pre" diagnosis of MS.
    Here are my symptoms:
    Numbness, mainly left side of body, tingling that moves from one part of my body to another, cramps, spasms, tigntness, "wrestless" feeling in limbs, light headed, my left eye ball is once again numb, migraines(occipital nerve?), my knees buckle, I fall over(balance), my ears ring and I get dizzy(horrible), new one is my bladder does not give me any signal it is full. This happed a little over a month ago for the first time. Lasted about 3+ weeks. Either my lower belly aches or it feels like there is a small ball in my lower belly. A lot of times, I am not walking straight. My thighs, oh my gosh, my thighs! This is the worst of it! Makes it so hard to walk. So painful. Feels like I am walking through sludge. Tired and painful.  The baclofen has really helped. Its not 100%, but it helps so much. My bladder can release the urine after I take it, I start to walk straighter(not completely straight). And I have made my long list for countless doctors. They glance at it and hand it right back. I know there are more symptoms. I am just tired of typing them. 
    After being misdiagnosed with lyme and a pituitary adenoma, I am going to just take the MS diagnosis and work with it. When they do the next mri, maybe the foci will be there, maybe they wont. If the diagnosis changes, it changes. 
    Tests, B12 is 502, vit D I cant remeber, I know it was normal, Ill have to go in my folder and look at the number. My A1C is 6.4, they say too low for the symptoms I have. Blood pressure is normally 111/70. On the rare occassion it is 130/90 something. The rare high bp is normally after I am finished with work or in an extreme amount of pain. (I am a dog walker, and the pain does interfere work). 
    And this is one of my fears. The symptoms interfering with work. I walk a lot. What if it gets so bad that I cant work? I have some goals I plan on reaching over the next 5 years, and if my mobility changes, I will not be able to achieve or even start these goals. This scares me. I mean really scares me. Over the last 1-2 years, about, my symptoms have really shown themselves. I am having a hard time bending. I was cooking the other day, my hand jerked so hard the spices literally went everywhere. I want to move to the country and have chickens and goats! I want to hike the trails on the pacific coast and the appalachien (sp?) trail. I mean, how can I do any of this if brushing my hair tires my arms? I also love my job. I know a lot of people still do all these things. I guess I am just afraid of the unknown?