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    MS or something else?

    Hi everyone,

    I'm a 28yr old, healthy and active female currently waiting to see a neurologist after several small lesions were found on my MRI. But wanted to run my story by you all to get your thoughts as the Neuro appointment feels like it's taking forever to come and the not knowing is hard.

    I initially went to my GP a few months ago for fatigue and severe and frequent dizzy spells. They were mostly postural so my GP wasn't too concerned but ordered some routine bloods. My iron came back low so I had an iron infusion. Everything was normal incl BP.

    After iron infusion I had nausea for 4 days, I got up the first morning and my partner was cooking bacon, it made me want to vomit. I initially thought it could be from the infusion and still dont know if it was. Then thought, I might be pregnant because it was exactly like the morning sickness I had with my daughter. I then started needing to go to the toilet frequently overnight, where I never do this. This made me even more convinced I was pregnant however I was/am not.

    Mu fatigue got worse and I would regularly have days or at the very least afternoons where I could not get off the couch. Not ideal when you've got a toddler. I started getting random bouts of shortness of breath, tight chest, doing not much made me feel like I'd just ran for km's. GP got heart ultrasound, chest X-ray, more bloods (diabetes, B12, D, etc) all came back normal.

    Then one night, sitting on the couch relaxing my right arm and hand started tingling, had a numb sensation, weakness and cramping. It was like my hand wanted to seize into a semi closed position. I Got up and walked around doing things to see if it went away. It didn't. It had been going about 3hrs when I went to bed and the next day when I got up the tingling and cramping was gone but the weakness, numb sensation and aching were still there. I went to ED and they did some physical tests and bloods. Everything was normal except when he was doing the reflex test my right foot wasn't flinching when he tapped my heel. He went back and forth over and over between my left and right. Left moved, right didn't. He didn't say anything about this and said he didn't think there was anything serious wrong, perhaps migraine aura (I don't suffer from migraines) and referred me for a CT (came back clear) at a later date just to be sure. My GP treated as possible stroke until we ruled that out.

    After that 'episode' my arm continued to ache for the next 2 days, it still aches now but more so if I use it too much and I still get the occasional buzzing. I had an almost constant dull headache for the next week and I'm still getting it almost everyday but not for the whole day.

    My fatigue has eased but that could be due to the iron infusion finally working its magic, however I still get tired very easily and find simple things exhausting.

    A week ago I was cooking dinner and suddenly felt like my chest was being crushed and the life squeezed out of me. I couldn't breathe and it dropped me to my knees. It was incredibly scary. I had it again a few days later but not to the extent of the first one.

    The tingling/buzzing started in my right leg/foot a couple of weeks ago, it can be so mild that if I'm moving around I don't notice it so I'm not sure if it's constant or not. In the last week it has progressed to a strange heavy/dead leg kind of feeling as well as the tingling and sometimes an ache. It also often feels like my foot is going to twitch/jolt but it never does.

    I have no motor issues and can still use both my arm and leg fine. My right arm is definitely weaker than it was and my joints often ache.

    I had an MRI of my brain, non contrast, and it showed several small lesions. The radiologist report says that they're not typical of MS but MS can't be ruled out.

    i know no one here can diagnose me but I just wondered if these symptoms are typical of MS or not.

    Thank you for your time

    Jade

    #2
    Hello Jade,
    I'm not a doctor and I realize that you know my thoughts are just the ramblings of a malcontent ! I do think that you are experiencing MS 'style' symptoms ! I suggest that you investigate the McDonald criteria and try to keep your 'cool'. Anxiety and stress will exacerbate the symptoms . You need to do many more tests ! Good luck

    Comment


      #3
      Hi Fromdownunder:

      Just like your brain lesions aren't typical of MS but MS can't be ruled out, some of your symptoms are typical of those that occur in MS, but some of them aren't. And of the ones that are, those symptoms are the same as symptoms that occur in dozens of other conditions, so symptoms alone don't get you any closer to a diagnosis. There's a set of diagnostic criteria you have to meet. Which means that you'll have to go through the whole MS workup to find out whether you do or don't have MS. The waiting is hard, but there's no way around it.

      Comment


        #4
        Hi Downunder,
        Yep unfortunately I agree most of your symptoms and having lesions does sound like ms but there is a process. It can be very frustrating. Another thing is that you mention your toddler- it is very common statistically in ms for the first presentation of symptoms to occur after a woman has a baby. They don't know why exactly but is has been noted.
        Please be comforted in the knowledge that -what ever is causing these problems is more treatable now days than ever before.
        Where are you in Aus? has the heat been bothering you?

        Comment


          #5
          Hi everyoneSorry it took me so long to get back to you all but I was busy getting married! 😃Thank you, I appreciate you all taking the time to respond.

          Since that time I have seen my neurologist who ordered a spinal MRI looking for lesions, magnesium B12 and something else bloods which were th only ones I hadn't had to rule out other stuff (all came back clear) and started me on migraine preventative to either rule in or out migraine with aura. The meds have stopped my headaches (not migraines) but not the symptoms which as of yesterday got worse after having a period of 'remission'.

          My right leg was limp/weak and had a numb and tingly sensation, it felt like it wanted to just drag and not walk. I went up some steps and led with my left foot (I'm right handed) and stepped with my right onto the same step, instead of stepping up onto the next step. Once I realised I consciously tried to step on the next step like I normally would and couldn't. It was bizarre.

          My right arm/hand is weaker too and getting pain. Had my full spinal MRI today, and will hopefully get results tomorrow but not seeing neuro til the 20th June. Anyway I just wanted to touch base to say thank you & up date my situation.

          Comment


            #6
            Try to get a 3T MRI at this point

            When I was first diagnosed, several of my lesions were very small on the 1.5 T (Standard) machine, but when I was referred to a tertiary care center, the MS specialist ordered a 3T MRI that showed several new lesions and brainstem lesions with lots of contrast uptake on FLAIR. Your symptoms sound like my second round of first symptoms that caused me to go back to the neurologist. I was diagnosed based on the MRI. Keep pushing for an answer. Congratulations as well on getting married. Your lumbar puncture may come back negative early on in the disease, but it might be worth getting one just as a back up for support for diagnosis. Otherwise you may just have to wait.

            Take care and keep us informed
            Lisa


            Originally posted by Fromdownunder View Post
            Hi everyoneSorry it took me so long to get back to you all but I was busy getting married! 😃Thank you, I appreciate you all taking the time to respond.

            Since that time I have seen my neurologist who ordered a spinal MRI looking for lesions, magnesium B12 and something else bloods which were th only ones I hadn't had to rule out other stuff (all came back clear) and started me on migraine preventative to either rule in or out migraine with aura. The meds have stopped my headaches (not migraines) but not the symptoms which as of yesterday got worse after having a period of 'remission'.

            My right leg was limp/weak and had a numb and tingly sensation, it felt like it wanted to just drag and not walk. I went up some steps and led with my left foot (I'm right handed) and stepped with my right onto the same step, instead of stepping up onto the next step. Once I realised I consciously tried to step on the next step like I normally would and couldn't. It was bizarre.

            My right arm/hand is weaker too and getting pain. Had my full spinal MRI today, and will hopefully get results tomorrow but not seeing neuro til the 20th June. Anyway I just wanted to touch base to say thank you & up date my situation.
            Disabled RN with MS for 14 years
            SPMS EDSS 7.5 Wheelchair (but a racing one)
            Tysabri

            Comment

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