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  • Lizbeth
    I have been tired(understatement!) getting horrible sleep(up every hour at night) ready to go to bed the second I come home.  Lately my upper legs have that achy muscle and now my arms that get worse at night. The tingling in fingers and foot comes and goes.  I am moody as all get out.  

    I call to ask the neurologist cuz I've only seen him twice since diagnosed in November of 2017.  Every time I call- his nurse calls back with it doesn't sound like MS symptoms- but when I read about MS these are all possible side effects from my medicine Tysabri.  Neuro tells me to see normal primary care. 

    I guess I'm wondering what others think.  Should I ever call the neurologist first or just go straight to my primary care?  Do any of these sound like MS symptoms I will just have to deal with- has anyone else dealt with these?  Or does what neuro says through nurse make sense?  Am I overthinking things? I hate being diagnosed, then being told see you in 3 months- call with any questions but the answer is always- it doesn't sound like it's MS.

     
  • maria1
    The proccess of elimination is the game we play almost every day. Not sleeping has many causes, mostly it is spasms that wake us over and over in a night. Sometimes too, it is sleep apnea. I always thought it was because everyone else was asleep, I could finally hear myself think and feel peaceful. 

    Even if it, or any other symptom is ms, it has to be placed in order of importance, how much is it affecting me, can something be done about it, is it temporary, will it last forever.

    Introspection helps sort through whether it is something needs immediate attention. On a scale of 1 to 10 how bad is it, bad enough to go to the ER?

    in the discussions there is a topic: Symptoms of MS which will describe plenty of them for you. nmss.org also has plenty of info as does multiplesclerosisnewstoday.org. 

    The pcp is a generalist, a person who sees the bigger picture of the body, with all the little stuff that occurs, a good person to chat with, usually more accessable and a lot cheaper. 

    Is it ms? sometimes even the neuro is not sure. For many of us, there are other things going on too. Our weakened immune system lets us get other things. And every body is different. Time and knowledge will get you acquainted with the new you. When you know there is something wrong you will persist at finding a fix to help you feel better. Most issues are not threatening just enough to make us miserable on our journey.

    Set yourself a priority list: is it bad enough to take the day off, is it lasting longer than a week, is it bad enough to see the pcp, is it bad enough to go to the ER. you the list as a guide and remember, we always have to wait, so dont push yourself beyond the too late stage, because you will ahve to wait to get an apppointment with the doc, you will have to wait your turn in the waiting room to see the doc and you will have to wait in the treatment room for the doc, wait wait wait, so dont wait until you are at your wits end.

    Most symptoms of ms are listed everywhere on the internet, the more you learn the better to cope. 
  • gabrielle519
    Well said Maria!!!
  • Lizbeth
    Thank you for all this info.  This definitely helps a lot!  So many days I think "I got this" , then I get nervous and second guess myself.  I know there is a lot to learn- which is why I love this site!!! 
  • anywhereoutofthisworld
    Being newly diagnosed with MS, like you I understand your confusion. I am gonna list for you some 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.
    ------------------------------------------------------------------------
    I like you, get the pain, tingling & numbness in my hands, feet/legs also arms. I almost always have a headache, ibs & ringing in my ears. I also get bad fatigue, heavy legs/arms, back pain, overactive bladder, insomnia (I often dont fall asleep till like 4 am). Those are some very common symptoms for me. I was diagnosed via EMG test with bilateral carpal tunnel syndrome, but I actually believe it's partly carpal tunnel and MS related. That's just what I think cause the cause the pain & numbess I experience, isn't always sparked by doing the type of activities that would normally cause carpal tunnel type pain. I also was diagnosed with cervical spinal stenosis, after a c-spine MRI and I also believe that's MS related, but again that's just my belief. Here's my diagnosis backstory - 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. Due to the amount of lesions & 'o' bands, my neurologist believes I'd actually had MS for quite some time.

    I hope you can find some answers, I'd urge you to go back to your neurologist if possible in person and bring with you a list of any symptoms you have in question. If he doesn't take you seriously you may be better of switching neurologists. The better educated we are and the better information we have to pull from, the stronger we become and the better chance we have of staying ahead of the game. MS doesn't need to beat us and it should never have that kind of power. Having a strong MS healthcare team around you is beyond imperative!
    There is something of the warrior in me. - Lech Walesa
    There is something of the warrior in me. Lech Walesa
    Read more at: https://www.brainyquote.com/authors/lech_walesa
    There is something of the warrior in me. Lech Walesa
    Read more at: https://www.brainyquote.com/topics/warriorThere is something of the warrior in me. - Lech Walesa[/quote]

     
  • Lizbeth
    Thank you!  It's been a wild new ride that I swear won't let me get down- just have some of those bad days and the other day I was frustrated!!! I went in to ER last night for my first bout of Vertigo- don't know if it's MS related or not- but it scared me when I couldn't walk and fell out of bed!  
  • beaurylancambria
    Your post explains exactly why I no longer go to the doctor. Being newly diagnosed, you think, I have a problem, someone should fix it. Not the case with MS. The first 6 months of my diagnosis was spending $40 to hear " you have MS" or " doesn't sound like MS ". It was then I learned it was up to me to figure it out. My experience with MS has taught me that symptoms come and go. Some last a day, some a week and some more. The most annoying was every time I would lay down, my body would go numb. I could feel it. It started with my feet and worked its way up. This was my longest lasting issue. Two years. One day it stopped, it's been over a year. It was definitely annoying, but tolerable. In time you will get used to the daily changes. I don't personally take any medications, but I know they are available for many of the symptoms. It took me a good year to get it all (most) figured out. Some days, I say ' well this is new" and then I wait. You will learn as you go.
  • gabrielle519
    Lizbeth,

    I'm sorry your neurologist is doing that to you. I don't sleep as good as I would like I take amitriptyline it does help. I went to see a psychiatrist to manage my antidepressants. He is the one that I talked to more about my sleep. He wants me to get a sleep study before prescribing anything because they want to make sure they are treating you for the right thing. I talked to my neurologist about the fatigue but I take provigil to help with that. I am also on Tysabri been on it for years like over 5 years. I find that right before my infusion the drug starts wearing off and it wears me out. Then a few days after the infusion I am exhausted from the med itself.

    I noticed that sometimes my muscle and joints ache. I know its the MS but my neuro says not really but I know my body and its the MS. I take over the counter pain relievers and use heat to relieve. Tingling I have but I'm just used to it now don't really notice.

    I too am super moody all the time. I have discussed with psychiatrist he said it is a symptom of MS. I really don't want any medications to treat it because I just am aware and try to prevent reacting to it when I'm feeling it.

    On Tysabri you should always let your neurologist know because the risk of PML makes it way to risky not too. I'm sorry they are making you feel as if you shouldn't call but I would. I have had all those symptoms and I think they are the MS. I have heard so many stories so many people who were made to believe they were over thinking it and it wasn't always the case. You also may want to think about getting other doctors involved like a sleep doctor or psychiatrist. They maybe able to help you too.

    Also I know you have been on the Tysabri website but you can also take a look at the MS society website they have a lot of information on specifically MS that might explain some of the symptoms but also help with alternative therapies. Good luck!

    Gabrielle

     
  • Lizbeth
    Thank you- the note I read from others it sounds the same with Tysabri.  I am definitely going to have a long list of questions for my neuro next time I see him!!! 
  • AnyBeth
    Um, when I get that constellation of symptoms (with a different sleep issue), it's due to magnesium deficiency. I have MS, but that kind of achy, crampy muscles, tingling, being out-of-sorts, and fatigue that NOTHING touches... for me, that's electrolytes. Could be worth getting them checked, balance being important.

    How do you know if something is MS or something else? Practice, I guess. I still don't know for everything, but there's a feel to my (treated) RRMS.   If a symptom gets worse with heat (or improves with cold), it's more likely to be MS, and not MS if it doesn't. Symptom or two arising, peaking within a day or two, then staying steady or resolving... I'd call, especially if it was a known MS symptom of mine. Various sorts of symptoms progressing over days, I'd look for another source first. If everything that's happening is an MS symptom of mine but isn't like my MS, I'd still call my neuro for advice on what to check out, at least the first time. I'm more than a decade in and still learning, but I'm more certain of when to call than I used to be.