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Thread: progressive sx years after ACF

  1. #1

    progressive sx years after ACF

    a bit of hx
    as a medical professional, I was initally told my sx (irregualr gait, funky sensation, heat intolerance, fatigue which improved on resting, intermittant breathing problems, frequrent lung infections, urinary urgency, left sided weakness) were all in my head (i.e.psych), although I could never get a psychiatrist to agree. And being hyper reflexive with a positive hoffman sign is a normal variant.

    After an MR of the brain, they found scattered small (<1cm) white matter lesions and told me I had MS~1994

    Then they said since my spine fluid was normal and my sx were progressing w/o changes in MR (and none enhanced) they said it was psych again

    In 2003, I had my 1st cervical MR, which showed an expelled disk (? how it happened) compressing the cervical cord (C5-7) this point I was having breathing issues with decreased expiratory pressure (obviously due to lack of effort they said previously)

    I had an ACF and things got significantly better (no perfect, but I was walking and breathing better)

    A year or 2 later I started having increase in sx again, but they would flucuate---again it was obviously psych---MR showed T2 lesion at C6 that was likely and artifact-2005

    2008 after numerous "eposides" of worsening and mild improvement, now with swallow problems, particularlly liquids, and multiple lung infections (pentration and presumed micro aspiration on multiple modified barium swallowing test--which appearently still could be psych)---they thought it might be MG

    By now the MR showed a 7mm long focus of myleomalacia, Binding Ab were negative and modulating weakly posible with 1 normal, 1 mildly abnormal and 1 interdermate SFEMG, I was again told it was psych---by this time I was very depressed and was hospitalized for major depression---I win for the neurologists

    I returned to my baseline for 2-3 years (and stayed away from neurologists), but am now having increasing problems on the left, sensory, my urinary problems have increased (I now need a bladder pad all the time, swalowing is a bit worse (I don't know that this could be due to a lower cervical spine issue) and my MR yesterday shows myelomale3cia that is some what larger than before (now~8mm long) and somewhat wider

    My fear is that something I'm doing is slowly making things worse (i.e. I've been exercising more recently--stationary bike, walking more with crutches, and sometimes only 1).

    My primary care still insists that it is MS---I tried to get a local neurologist, by after reading my records I was told that I do not have anything neurologically wrong and they refused to even see me

    I'm seeing a out of town neuro today, but at this point I don't know what to believe or who to trust---I can't deal with the disability I have now, but I certainly don't want it to get worse

    Sorry for the rambling--The question in all of this: Can a small increase in myeolomalacia cause recurrence of sx, and what can I do to pervent it from getting worse?

  2. #2
    Your symptoms sound very familiar, as I have many of them due to MS - but of course, they can also be caused by other conditions so you need to be thoroughly examined and evaluated by experienced neurologists. Fortunately, since you're in Virginia, you're within reach of some excellent teaching hospitals. I hope that your appointment today will put you on track for getting a correct diagnosis, and that this out-of-town neurologist will be able to answer your questions (as they can't be answered with much specificity until you know what's causing your symptoms).

    It's small wonder you aren't sure what to believe at this point, and it's sad but true that diagnosis of neurological conditions often follows a meandering, frustrating course. Hopefully you're within sight of real help. Best wishes, and welcome to CareCure.

  3. #3
    Senior Member willingtocope's Avatar
    Join Date
    Jun 2010
    Pleasant Hill Iowa
    I, too, find your symptoms familiar...along with your search for an actual dx. I was...ahhh...lucky enough to be seen by 6 different neuro's who all dxed me according to their specialty, before winding up at the Mayo. That golden catheral of medicene said,"well, it isn't anything else, so it must be MS".

    Kind of puts things back to square one. No real treatment. Symptoms get worse, gradually, but can't find a doctor who will help. I actually had one tell me "You're with it...I've got 20 year olds to help".

    You have my sympathy...and advice...keep looking. There's a doctor out there somewhere who will look outside the box and see if he can find the real problem. If possible, don't give them your records ahead of time...start from scratch.

    Currently, I'm working with an internist...he said, "well, maybe it is MS, but there's lots of things we need to look at to make sure the other systems in your body are fuctioning normally before we let it go at that."

  4. #4
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    I'd start by getting the symptoms you're experiencing first. Try starting with a good urologist and try your damnest to NOT go into medical speak with them. Too many docs are tired of what they consider paranoid interneters instead of educated patients/consumers. If you're leaking there is a reason and ruling out psych is the hardest so you will get some neuro-urological tests if it doesn't show up as child birth related (or similiar) stress incontinence.
    And since I am not a medical professional as most moderators here are not could you please spell out things like ACF? I am assuming an anterior cervical fusion.
    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

    Post symptoms and neurologists

    It is not uncommon from transverse myelitis and multiple sclerosis presentation to be similar and/or confusing.

    Neurological conditions such as TM and MS, and others are extremely frustrating for individuals with symptoms that have exacerbations. It is unfortunate that you have had difficult interactions with neurologists. A good neurologist would be able to provide education or have a supportive staff who could provide the education. It might be good to find a support group in your community and talk to others about neurologists whom they have used and have been trustworthy.

    I hope you get the medical care to help your condition/symptoms.

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