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Thread: Friend just diganosed with TM but now they are saying spinal cord stroke

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    Friend just diganosed with TM but now they are saying spinal cord stroke

    I'm here because a very dear friend was diagnosed on Friday with Transverse Myelitis C5-C8. He is 53 years old, no history of heart disease, otherwise healthy. First he lost feeling in foot, then arm and had pain in chest with what they thought was a heart attack..ruled that out and then on Wed he went numb from nipples down only use of left arm and drop right arm. MRI presented signs of TM. Spinal tap showed no white blood cells but the doc felt it was viral related and said certain it was TM. As of today he has not responded well to two rounds of steroid treatments (started them on Wed) so today they said no it's not TM, but spinal cord stroke. He can wiggle his toes and slightly lift legs as of Sunday but they are saying 'no progress'. He's in his second MRI now and they are running more blood work, but I'm here to get info....should he get to Hopkins TM Insitute? I want my friend to walk again and feel we may be at a critical point here since they keep waffling on diganosis.

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    Have more info to add to yesterday's post. Head of Neuro (who at first incorrectly diagnosed with TM) and another neuro now agree it was Spinal Cord Stroke. He's entering the spinal unit today to start four hours of inpatient/rehab for 4-6 weeks. They also did a neck MRI focused on veins/arteries in that area and a full work up of his blood. We are still waiting on those results. I have several questions I can't seem to get answers on anywhere...is TM brought on by a spinal infarct? Are they different...yet treated the same? Obviously, he didn't respond to steroids and they don't think there was a virus involved, but I'm just not really understanding if this is worse/the same? I guess it's not good obviously that he didn't respond to 2 rounds of steroids. My next ? is this..can the nerve cells regenerate or no..can he regain ability to walk ever again? I do know they treated within 24 hours with aggressive steroids so that should help right? Just trying to get more info or stats on this.

  3. #3
    I'm sorry I don't have answers for you- I just wanted to say that I hope your friend rehabs well and they can figure all this out. He's lucky to have you.

  4. #4
    I don't have answers, either, Sarahale, but like BlueRing I wish your friend the best and salute you for supporting him.

    One thing I've learned about non-traumatic SCI is that the boundaries between conditions are very fluid and difficult to define - which is why equally astute clinicians can have different opinions. My wish for your friend is that his doctors can arrive at a viable treatment and rehab plan for him that will optimize his ability to regain function and prevent deterioration. He is indeed fortunate to have a friend who cares enough to research and ask penetrating questions.

  5. #5
    Moderator jody's Avatar
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    send him here.
    there are others here who have had a spinal stroke.
    sorry about your friend an what you guys are going through.
    I dont have answers either, but care cure is full of answers if you do some digging.
    bless your heart for looking out for him.
    the one common thing about spinal cord injury is that friends disappear. they just do. I hope you stick around, because the lonesomeness and isolation are the heaviest thing to be crushed by.
    good luck to you and your friend, and welcome to care cure community.

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    Moderator jody's Avatar
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    the best place ever for rehab is jefferson magee, in philadelphia. that is just my opinion, but maybe someone else can recomend a place too.

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    Thank you

    For all the kind words and support. I do plan to send his wife and him here once they are ready to handle it. He's still in a bit of shock at this point. He is at Charlotte Medical Center (apparently a very good facility and one of the few that have a dedicated spinal unit) I do know they are getting a 2nd opinion and I pointed them to TM Institute at Hopkins. I believe they are sending his films there, but the team of doctors where he is seem on it now that they agree on diagnosis.

    This guy has more drive/will/energy/positive thinking than anyone you'll ever meet so I have to believe that is in his favor. We feel good that we have a diagnosis and they got him in rehab today because I know he will put 150% into it.

    I have been doing so much research, but it honestly sounds like each case is different..we want timeframe/answers and they just can't give us that.

  8. #8
    Quote Originally Posted by Sarahale View Post
    I have been doing so much research, but it honestly sounds like each case is different..we want timeframe/answers and they just can't give us that.
    Yes, that's it in an incredibly frustrating nutshell. The best of all worlds would be one in which the doctors are committed to working with one another for the benefit of the patient, with each member of the medical team possessing solid academic credentials and real-world experience. It's a tall order, but the odds of fulfilling it increase where centers of excellence (such as Johns Hopkins, for TM) are concerned.

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    I'm back and now looking for referrals ( thank you for ones you've sent through already) for Spinal units. CMC is saying they don't have any beds available.

  10. #10
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    Good news. Caralinas Rehabilitation (at CMC) has a bed available..he's being txf'd now. It looks to be one of the best in southeast.

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