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Thread: I probably shouldn't be here...but if anyone can help me...

  1. #51
    Quote Originally Posted by FrozenGirl View Post
    Hi means my legs feel like they are in a bucket of ice or standing outside in the dead of winter with a windchill of -30 with shorts on - a painful kind of freezing - like there is no blood running through my veins. It's hard to describe.

    my daughter 42 just comittet siucide,she could not stand the pain anymore'her legs und feed were frozen she sat on her feed ,slept with lots of socks and pants and shoes,all it does made her sweat and that gave her more pain,the house had to be 80 degree and the night she had to cool the house down so she can sleep and in the morning we had to get up to make sure the house is 80 degree bevor she got up
    she went to vanderbild ,duke, mayo and every other clink and got no help 3 days bevor she went to the hospitl her doctor send her home with a shot that was friday,monday we found her death and i dont know how to go on
    i miss my melody so much
    im sorry to tell you all that but it looks like nobody knowes what is wrong
    2 weeks ago my life just fell apart
    wish you good luck hope you get what you looking for

  2. #52
    Senior Member skippy13's Avatar
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    Mar 2008
    in a handbasket
    I'm so very sorry for your loss. There is nothing anyone can say to make this any better for you. I wish you peace and comfort.
    Anything worth doing, is worth doing to excess

  3. #53
    Hi Frozen,

    I know what you mean by problems with Wait times. I've got TM and I live in Calgary, My neurologist just told me I would get better and left the room. I had to almost fight with him for him to write down the diagnosis and in the end he almost threw it at me.

    I am now a year later having trouble again, fighting depression and mini epsiodes of loss of feeling. it plain sucks.

  4. #54

    oh them frozen shin bones,oh them frozen bones... can't take it anymore

    I saw your post and I knew I needed to register, just so I could tell you about me....
    And this is easy, because I have the Same freezing symptoms. cold to the touch with my hand, numbness that has spread.
    I have Multiple sclerosis. I take gabapentin and it works great for some things, but not the cold, that goes into my bones. The calf and shin and feet are the worst. I wear heavy socks year round, and tuck in my pj pants into my socks to keep air off of my shins and calfs. Right now, I have a fever from a UTI, and I am still freezing below my knees.

    I have an autonomic disorder that causes my normal body functions to go haywire. This includes my heart, breathing, circulation, etc.

    I do not have a back injury. I came to this forum looking for answers about supra-pubic catheterization. So If I have no back injury and the gabapentin works for me on my other nueropathies, then I am thinking you may have two problems going on, just like the doctors told you. You have the disc problem, and you could have MS.
    You have many other symptoms of MS also. Like another poster said, you can have a normal mri and still have MS.
    There is nothing they can do for my legs that I know of. I just suffer it and use heated blankets. I am fifty two and the ms is to advanced for the medications, like interferons. I hope you find the help you need.

    another person who posted to this suggested keeping a good relationship with a neuro. I was thinking the same thing, because ms can progress, and you will have more symptoms. Write them all down, and date them. Also write down if they are seem to get better and how long it takes, what you did to try to help it, and anything else that is pertinent to your troubles. If you have MS, you need to get dx'd fast. Early treatment may save you from terrible disability. make a list of the symptoms along with the duration and degree of disability you experience with the symptoms. that you already mentioned and give this list to your neuro. You can save a lot of time by going to a neuro who specializes in MS.

    Your balance problems and some of the other things you mentioned, sound just like the course my ms took. I think your back is one problem and ms is quite another. you need help for both. You might consider getting your mri for the brain work done first in case they insert anything metal when they work on your back. I had a cardiac pacemaker put in, and then could not have an mri. The metal in the leads to my heart are said to become ufo's because of the strong magnetic forces, with a trail of blood in thier exhaust fumes. probably a silly discription. lol

    just knowing what is causing your symptoms will give you some peace of mind. not knowing, being in "limbo" is excruciating. MS isn't such a horrible dx these days. They have so many ways of preventing advandced disabilities if they can catch it early.
    Has MS been ruled out for you? if so, are you satisfied that it is not MS?

    I'm thinking also, I don't believe I would hold up well living in canada with the problems I have with cold.... but I also have trouble with heat, and I can relate to what you said about perspiriing through your clothes, just trying to get you legs warm. The neuropathy in my hands makes them cold too, but more painful than cold.
    you have lots of ms symptoms.

    You are very good at explaining your symptoms, and don't let them take you down that road of pshycosomatic. If the stress you are feeling is causing you anguish, it is for good reason, and not an indicator of something wrong in your head or thinking, but just stressful disease and symptoms. You should be stressed, otherwise you wouldn't be motivated to do the research it takes to help yourself and see it through. keep us updated, if you would be so kind.
    All my best to you, hope this helps some,

  5. #55

    Thumbs up frozen legs: I am so glad MarlaKaye wrote to you

    MarlaKaye and the reply to Frozen:
    I am in both your situations, though I do take the pain meds, I do have a bad spine and bulges and degeneration and 7 brain lesions and no diagnosis but caring people.

    I can not pee, I scream at night as the pain is unbearable, I can not work, I have colitis, not flared but about 20 -40 bm a day not a joke, I am often home bound, my bones actually hurt in my arms and I have severe migraines and in am, need help to get down the stairs.

    my fluid came back old but not with any sign of ms, but I know I have it, and I am glad you pointed to this to Frozen.

    I do know my mri status from brain where my lesions are, to my hip, and that is where the bones are injured, frayed, some stenosis, a lot of disc bulges from neck to where they stopped the mri, it was all day after the lesions were found, but to have no diagnosis, it will make a person insane, and my neuro and gastro, and uro and phd and dietician as I lost 1/3 of my body weight so far, all care, and I am so frustrated.

    what does a diagnosis do, it gives the pain dignity, and the ability to ask for adequate help over and over, without embarrassment.

    good post MarlaKaye, I remain very sad, daily and I am now almost homebound and that leave me without pals, as I don't do lunch, my gut can not do this, and I can not start pee, so I have a lot of troubles and the leg pain and arm and head pain keep me out of my mind.

    I do the machine eliptical at times for 2 hours and I have pain meds. its a hard thing and it was good you wrote her. A Toronto born person, but not when there was the health care system that is in place there now.

    aunt in victoria just died (3rd of stomach cancer direct family my mom, grandpa and her sister, my sis and I are sick in gut daily)

    my aunt could not get care or tests on time.

  6. #56
    wow Simon, it sounds like you are really in a catch 22. Dead if you do, and dead if you don't.
    I agree wholeheartedly with what you said. and I quote "
    what does a diagnosis do, it gives the pain dignity, and the ability to ask for adequate help over and over, without embarrassment. "

    I have a pacemaker, and that means no mri's, but previous mri's show lesions.
    at some point I said to my dr. "I want you to know, I am dx'ing myself with Multiple sclerosis. Already in a wheelchair for years and taking all the medications that people with ms take for pain and symptoms. We talked about it, and he said well, why don't I get you in to see this particular neuro. I had seen a couple already and been dx'd with dystonia... it is also a symptom of MS.
    the PcP doc said he would write a letter to him. We asked for an hour of his time. WE knew it would be very expensive, but didn't want to fall through the cracks again.
    When the Neuro finished examining me, He said, you are a textbook case of MS. I could have fallen through the floor, you see my husband was doubting my sanity by this time, and it was ruining our relationship/ he was refusing me the help I needed because he didn't want to enable me to be whatever it was I was suposedly being. There were plenty of people making comments to him about my health problems, and as you know MS, or anything they ccan't figure out, gets shoved off into the psychosomatic realm.

    Now, twenty five years are lost, years that I could have been getting some drug therapy. I am 52, now, and neuro says too late for the CRABs. He says I have the degree of disability that I have now, and there is nothing that can fix that.

    I can't remember why I am writing this to you. oh well, maybe I will later. post a question if you want to know anything. I will get a notice in my email.
    Last edited by MarlaKaye; 05-31-2009 at 12:36 PM. Reason: unfinished

  7. #57

    condolences Sissy

    I am so sorry for you to have lost your daughter. I can't imagine your pain. I don't even want to be able to imagine it, because I don't think I could bear it.
    You are very brave. I pray comfort and peace for you! I know when people hug you or hold you, your arms still feel empty. I know that she loved you, and her love for you, and yours for her will never go away. Love is a enduring thing. Her love for you is still with you.

    I don't know how long I have, and I tell my husband, that even when I die, my love will still be with him. It will not die with me. It is of God and it is immortal.

    Oh how I wish I could ease your pain. I want to reach out and hold you. So with that I do, I reach out to you, and in my heart my arms are around my sister in pain, now.

    Heavenly Father, please minister comfort and peace to our sister, I ask this in the name of Jesus, Amen.

    It has been a few days now,Dearheart,
    can you respond and tell us how you are doing?
    WE care about you in your difficult days.

  8. #58

    Marla Kay

    thank you for your beautiful words
    my problem is i dont realy know how to right english and what to say
    its been 4 months now,melody my daughter just would have been 43 on August the 13.09
    all of as who know Melody let some ballons with messages in the sky ,at the same time
    she said she wanted to sit on one of the clouds and watch us
    it will never be better i cry every day when somthing reminds of her or when got somthing and i say ,now she will never see it,it is so hard to belief it is so
    thank you again
    Gisela Dale

  9. #59
    I'm so sorry for your loss!!

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