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    Old 05-18-2014, 04:50 PM   #1
    Xaleah's Avatar
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    Looking for insight

    First off hi everyone, I am 32 year old married mother of 3. I have a diagnosis of Syringomyelia which I know could be causing some of my symptoms. But here is a little of what has been going on with me. I have seen a neurologist and am now waiting for mri appointment of my head and neck. I have already had one of my t and l spine. Finding few disk problems and two syrinxs in T. One from T3-T5 and the other from T7-T8 but are only 1.44 mm in diameter.

    I am copying and pasting this from what I wrote for my doctor, and I will do a quick update at the end. Any and I mean any insight will be greatly appreciated.

    A few weeks ago I fell down the stairs twice within a few days and hurt my back, bruised and stuff. Then a few days after that I lost balance when going to the bathroom and fell and hit my head on the narrow strip of the door. Balance has been an issue for me for some time, getting worst sometimes. Its been happening off an on for a long time, but the past few weeks worst. I have a lot of stairs in my house, 12 steps from my basement to my first floor and then another 14 steps from my main floor to my upstairs where the bedrooms and bathroom is. There is 8 steps if I want to come in my main door instead of using the basement. I have issues walking up either set of these steps without stopping half way due to balance issues or severe weakness in my legs.

    I have been having bladder issues for a long time, I never mentioned it to my doctor before for a couple of reasons one being at the time I did not know it was linked to the other issues I was having and 2 because I was embarrassed at only 32 I was having bladder problems. I have issues peeing, I will begin peeing and then stop, but I still need to pee and I have to push to pee, then I will stop and have to push again, its like my bladder does not empty on its own. Also I could be sitting and have no need to pee but get up for something and then suddenly I have to pee and can hardly make it to the bathroom. I also wear panty liners (tmi) on a daily basis because of mild urine leaking.

    I have really bad memory problems, terrible.

    There have been times when I have spoken where it has felt like I was speaking with a mouth full of cotton, and my words came out jumbled and whom ever I was speaking to had no idea what I was saying. This usually corrects itself pretty quick, but it may happen several times a day. The person whom I am talking to cannot understand me, but then I can correct my mistake after 30 seconds or so. Or there are times when I know what I want to say but I am unable to say it.

    I have had difficulty swallowing, or really what feels like my body has forgotten how to swallow, but this does not happen very often. The first time this happened was actually a reaction to a new medication that I was taking. Since then it has happened on several occasions.

    Fatigue, is bad at times. I have never felt this bad before. Its like I just cannot get through the day. This happened for a few weeks and now its the other way I am not sleeping.

    I have the electric shock sensation that goes down my T-spine. This was actually what lead to the mri of my t-spine and l-spine and getting my diagnosis of Syringomyelia. Along with some pretty severe pain.

    I also have periods of time where I will wake up with both arms tingly, sleeping, pins and needles or just plain heavy feeling. This might happen several times a night for a day or two and then go away for a week or so and then return. But lately it seems to be happening a lot more. I also get similar feelings in my legs depending on what I am doing.

    After hot baths when I got out of the tub my feet get pins and needles burning feeling and my hands followed with the tingly almost itchy feeling not long after.

    I have no idea if this could be related or not, but this past probably 3 weeks or so I have been having issues with floaters in my eyes and a lot of blurryness like I am looking through a fog. Sometimes worst then others and worst on my left side, mild pain behind the eyes off and on.

    Have definitely been having pain, Joints are affected, hips and knees and knuckles. Also my back, I have had pain in my back for years, some of which is caused by things in my spine, My L5 is fused to my sacrum so this causes pain in that area because I do not have the movement that I should have there.

    About a week ago I lost hearing in my right ear, it was very short less then a minute, started with not being able to hear out of it, then a ringing sensation and then the sound started to come back.

    I am frustrated and feel like I am at wits end, I just want answers either way, weather it is solely my syringomyelia causing it or something else.

    My Family dr mentioned Ms, and got me into an urgent appointment with the neuro. Who said some of my symptoms are most likely caused by the syringomyelia and he does not think its ms but will not know for sure until I have the brain mri. I know in the mri of my brain neck he is looking for chiari malformation and checking if there are any more syrinxs in my neck.

    For 3 weeks I had bad wheezing several times a day, terrible night time and mornings, I am not sick, no flu, but it feels like someone is sitting on my chest,. this sensation comes and goes and sometimes is a lot worst then others. Changed from that sensation to feeling like I was breathing through a straw and the airways were pinched. I ended up in the ER, on 3 different masks, a steriod shot in my leg, and a load of meds. Since then (couple of days ago) I have not had any wheezing.

    Today I have a numbness/tingly/pins and needles sensation in arms and legs, hands and feet, in my arms it almost feels like a mild vibration.

    So any thoughts and insights would be greatly appreciated.

    Thanks In advance.

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    Old 05-18-2014, 09:47 PM   #2
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    Re: Looking for insight



    Syringomyelia causes cysts, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward. As a syrinx widens it compresses and injures nerve fibers that carry information from the brain to the extremities. Damage to the spinal cord often leads to progressive weakness in the arms and legs, stiffness in the back, shoulders, arms, or legs, and chronic, severe pain. Other symptoms may include headaches, a loss of the ability to feel extremes of hot or cold (especially in the hands), and loss of bladder and other functions. Surgery is often the "go to" treatment.

    As to your cognitive concerns, these could be related to the compression of nerves. Any symptoms which would "come and go" would exclude or severely limit the possibility of MS.

    I have swallowing issues due to my MS. For me it is a daily thing, but MS symptoms are usually 24 hours or longer. If you make a summary of those long lasting symptoms, then you would have a better idea, or the doctor should.

    Fatigue is a common complaint for MSers, but like with all symptoms, there is no specific symptom which all MSers experience. That is, nothing stands out in such a way that says "MS". There are also no specific tests for MS.

    Tinnitus is a rarer complaint among MSers. I experience pulsatile tinnitus. As to your eyes, floaters are not indicative of MS. Floaters have other causes and as we get older, we can experience an increase in floaters.

    If MS is a consideration, you should see an MS Specialist- a neurologist whose specialty is MS. Due to the nature of Syringomyelia, I would encourage you to get that attended to first. MS can wait as it is a lower priority in your current situation.

    Thanks for sharing!
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

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