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Thread: Variant of MS, anyone else?

  1. #1

    Smile Variant of MS, anyone else?

    Hi,

    I would love to know if anyone else has been diagnosed with a variant of MS.
    I was diagnosed with this 3 yrs ago. Paralysed from the shoulders down within 7months of diagnosis. Neurologists believed I was terminal as my deterioration was so rapid and I was getting worse every day. Optis neuritis, bladder retention, inability to cough, spasticity, pain and recurrent UTI's, every second week and endless antibiotics. I was using Betaferon with no success and doctors tried chemotherapy. Nothing worked until my G.P. prescribed oral steroids in a hope they might do something. Within a couple of days I started feeling better, especially the pain and the severity of the spasms. Within weeks my ability to cough had returned and my deformed hands began to get movement and coordination again. However the paralysis remained, until about 12 months ago when I felt a slight movement in my big toe. From then on things started happening and I am now out of my electric wheelchair and walking around with my walker. I am attending physio every week and improving all the time. My eyesight has returned, coordination, arms and hands are excellent. I still have the catheter and pain. Have not taken steroids for approx 18mths.
    I haven't come across anyone with this variant.

  2. #2
    I am curious if your MRI showed typical MS lesions (brain or spinal cord) and if your spinal tap was positive for myelin-specific immunoglobulins?

    MS can present as a sudden transverse myelitis, although it is not the most common presentation. Are you taking any of the CRAB medications? Glad you seem to be in remission right now.

    (KLD)

  3. #3
    I do not know if the spinal tap was positive to myelin- specific immunoglobins. Neurologists hadn't come across anyone like me before. This is why they confirmed a variant of MS. Initially they thought I had TM. My MRI showed lesions on the spine C4/5 & T1/2 T10 & T12 & tiny lesion in the brain. I am taking 1800mg Gabapentin, 50mg baclofen, 300mg tramal a day. Still a lot of pain & leg stiffness.

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by jmarie
    I do not know if the spinal tap was positive to myelin- specific immunoglobins. Neurologists hadn't come across anyone like me before. This is why they confirmed a variant of MS. Initially they thought I had TM. My MRI showed lesions on the spine C4/5 & T1/2 T10 & T12 & tiny lesion in the brain. I am taking 1800mg Gabapentin, 50mg baclofen, 300mg tramal a day. Still a lot of pain & leg stiffness.
    Marie, there is something commonly, for a very uncommon condition, called MS of the spine. It falls in the category of other myelopathies. That you have a lesion of unknown source in the brain though could move this into MS as about 30% of transverse myelitis sufferers do over a lifetime. Maybe take a look over at www.myelitis.org. Can I ask where you live, general area is fine.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #5
    I live in sunny Perth, Western Australia.

    In you experience have you come across anyone who has had such a remarkableh recovery after a diagnosis of MS? I have researched a lot other possibilities and to me it sounds more like acute TM.
    I have been on all the TM websites and there seems to me I have more similarities to TM, eg band like dysesthesis that I experienced during the early stages. Also the first symptom I had was bladder retention. My bladder has been a big problem during all this, I had to have a supra pubic catheter fitted because I could no longer manage self cath. I have had so many UTI's, I lost count after 50 in just over 2 years. Practically lived on antibiotics for 2 years.
    I am not having so many problems at the moment, but I am going to see a urologist in Nov to see if I can have botox in the spincter muscle and perhaps get rid of the catheter which would be wonderful.

  6. #6
    Quote Originally Posted by jmarie
    Hi,

    I would love to know if anyone else has been diagnosed with a variant of MS.
    I was diagnosed with this 3 yrs ago. Paralysed from the shoulders down within 7months of diagnosis. Neurologists believed I was terminal as my deterioration was so rapid and I was getting worse every day. Optis neuritis, bladder retention, inability to cough, spasticity, pain and recurrent UTI's, every second week and endless antibiotics. I was using Betaferon with no success and doctors tried chemotherapy. Nothing worked until my G.P. prescribed oral steroids in a hope they might do something. Within a couple of days I started feeling better, especially the pain and the severity of the spasms. Within weeks my ability to cough had returned and my deformed hands began to get movement and coordination again. However the paralysis remained, until about 12 months ago when I felt a slight movement in my big toe. From then on things started happening and I am now out of my electric wheelchair and walking around with my walker. I am attending physio every week and improving all the time. My eyesight has returned, coordination, arms and hands are excellent. I still have the catheter and pain. Have not taken steroids for approx 18mths.
    I haven't come across anyone with this variant.
    JMarie,

    I am surprised that they did not try steroids first. How long did you take the steroid? Was it methylprednisolone? Are you still taking it? Long-term steroids is not good for recovery and you should get off once it has stopped the progressive changes.

    Wise.

  7. #7
    When my neurologist first thought I had TM, I was given a 5 day course of IV methylprednisolone. At first it seemed to work but after a few weeks I went downhill again and just kept getting worse. After a few months I was given another course and still no results. I was injecting betaferon and that seemed to make me worse. I stopped that after 6mths and the doctors tried chemotherapy and that completely left me paralysed. From diagnosis to paralysis was 7mths. The oral steroids that seemed to make a difference, my GP prescribed were dexmethsone which I took over a 3 month period. I haven't taken any steroids for a about 18months.
    I wish I knew exactly what I have wrong with me. I am not totally convinced the Doctors have got it right.

  8. #8
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by jmarie
    When my neurologist first thought I had TM, I was given a 5 day course of IV methylprednisolone. At first it seemed to work but after a few weeks I went downhill again and just kept getting worse. After a few months I was given another course and still no results. I was injecting betaferon and that seemed to make me worse. I stopped that after 6mths and the doctors tried chemotherapy and that completely left me paralysed. From diagnosis to paralysis was 7mths. The oral steroids that seemed to make a difference, my GP prescribed were dexmethsone which I took over a 3 month period. I haven't taken any steroids for a about 18months.
    I wish I knew exactly what I have wrong with me. I am not totally convinced the Doctors have got it right.
    Being from sunny Perth makes a world of difference in diagnosis. Yup, I'd say you had acute TM based on syptoms and what I know of world patterns of TM. When IV methylprednisolone does not work and trying an MS drug made you worse with TM the next attempt is at plasmapheresis. Might even ask your neurologist to research trying a round of that now. I'd also ask him to take another look at the lesion in your brain and see if it's just a benign non-growing blob or something to watch.

    Good to hear you're improving Marie. Do get in touch with the TM support group down there. You will get a lot of support, information and the names of docs with TM versus MS experience.

    Sue
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #9
    My husband had his first signs of MS in July 05. His handwriting was not the same and he was dropping things. MRI showed two small lesions. No diagnosis since it was first attack. October 05 started having stomach cramps, then walking was off balance. October 31, 05 went in to ER by ambulance due to stomach cramps. which ended up being his bowels shutting down. November 7, 05 was on oxygen unable to breath, eat, swallow, talk, walk, move upper extremities, see, control bladder or bowels. Basically nothing. Went thru 7 spinal taps, all clear. 3 weeks of steriods, nothing. plasmapheris, this brought him awake but thats it. Even went thru brain biopsy because they had never seen a case of MS so bad from onset. Tested for everything under the moon, no probably cause. Only thing left was to diagnose him with MS. I like you are uncertain but willing to accept it. Now here we are a year a few months later. I brought him home not knowing what to do...he takes beteseron injections, lyrica for pain, two different antidepressants and a heartburn medication. Has control of his right arm, sight is imroved not perfect but improved. Some movement in right leg and left arm but not enough do anything with. We do ROM exercises to help keep things moveable at best. He's not made the improvements you have but he's still getting there.

  10. #10

    I suffer from TM

    hi im currently 14 and live in townsville, queensland, Australia and have suffered from TM since last year in october ( 10th) I was taken to hospital with a suspected pinched nerve only to find that after a spinal tap was perfomed twice that the doctor performing the tap realised that i had not enough spinal fluid to extract. so i then had a CT scan of the head, but to no avail. so they proceded to get an MRI of the whole body only to find that my whole spinal cord (that is in my case from the very base of my brain stem to the end of the sacral region) was inflamed 3 times its usual size. They diognosed me as having acute transverse myelitis, the most severe they had ever seen, later that evening when my mother noticed that my breathing had slowed, the doctors peformend a gag reflex test only to realise that i had no gag reflex at all. shortly after the lower part of my lungs collapsed and i was rushed to intensive care and was put on life support for five days. that night my mother was pulled aside and told that the chance of my survival through the night was 25% maybe less. however i pulled through and amazed even the head neurologist of brisbane childrens hospital. I was then placed on an extremly high dose ( 3 times that of an average adult dose) of quarterzoid steriods intraveniousley to reduce the swelling of my spinal cord. i was even threatnend with having to have a trachyotomy performend as i choked on weet-bix ,of all things as they thought i had breathed it into my lungs. during this time i was a complete quadriplegic then went on to be a complete paraplegic ( the doctors told mum that the chances of me walking again were minimal). as i recovered i underwent physiotherpay from the confines of my bed, then as i got better i could weel myself to the gym to undergo vigerous physio. when i began to stand i could only do so for 3 seconds with alot of help then as the weeks went by for a total of 12 minutes and 47 seconds. then i underwent walking exersizes with a rollator. later on with crutches ,now today i can walk and even jog to the doctors amazement. Now i no longer require a wheelchair and am happy to be able to do most things a fully abled person without my illness can do. i am now considered to only have lower limb deficiency which i think is alot better than being confined to a wheelchair. my story i think is nothing short of a miricale as nobody thought that i would progress this far within the 3 months that i was in hospital.

    I would greatly appreciate anyone who could tell me what they went through in order to be happy again
    Last edited by _2ndchance_; 03-27-2007 at 11:33 PM.

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