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Cervical myelitis: anybody else here has it?

Discussion in 'off topic' started by chartz, Jul 3, 2021.

  1. chartz

    chartz If it’s broke fix it!

    Hi,
    I’ve had skin sensitivity issues for some time — back of right arm and left pectoral (all of it), plus back of the neck at right too. All numb.
    The MRI pictures show C6-C7 myelitis with a white 11 mm white zone (it should be black) and a noticeably shrunken canal.
    Ah, my right hand has also become clumsy — I drop things from time to time.

    I also have neck and shoulder pain. My neurologist gave me pregabalin for pain management. It kind of works.
    I also have miction issues. My bladder is very hard to empty, with 24 hour no pee episodes.

    I’ve just had a spinal tap (totally painless, this) that shows nothing at all, lab tests returning all normal.

    Any similar experiences please?
     
  2. hifinutt

    hifinutt hifinutt

    hi chartz so sorry to hear this . i assist a lady with similar issues who has trouble with balance but she is amazing and keeps going

    the micturition issue is very very worrying , NO one should not pee for 24 hours , one needs urgent assessment from a urologist as you probably know back flow from bladder can cause kidney damage and multiple problems . one may have to have urodynamic testing to look at this . urgently but i am sure you know all about this .

    https://www.niddk.nih.gov/health-information/diagnostic-tests/urodynamic-testing

    "Urodynamic testing is any procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. Most urodynamic tests focus on the bladder’s ability to hold urine and empty steadily and completely. Urodynamic tests can also show whether the bladder is having involuntary contractions that cause urine leakage. A health care provider may recommend urodynamic tests if symptoms suggest problems with the lower urinary tract. Lower urinary tract symptoms (LUTS) include

     
    chartz and doctorf like this.
  3. chartz

    chartz If it’s broke fix it!

    Thanks for that.

    The odd thing is that not going to the loo after drinking literally litres of water doesn’t even ache at all. It’s just the feeling that something’s very wrong!

    I do have an ultrasound exam planned for Monday.
    They will check bladder-kidney-prostate potential issues.
    We will know for sure whether it’s caused by the myelopathy — a very likely hypothesis — or something else.
     
  4. mandryka

    mandryka pfm Member

    Good luck Chartz. Life’s a bitch, and then you die. I hope they get it under control and then you’ll carpe diem.
     
    chartz likes this.
  5. chartz

    chartz If it’s broke fix it!

    Thanks. ‘Carpe diem’ is my philosophy of life anyway.
     
  6. mikemusic

    mikemusic pfm Member

    Get off Pregablin now !
    Starts off good, or in your case not that good, then loses efficacy giving various side effects
    It's poisonous
    Coming off it gives horrific withdrawal symptoms
    The boss used to be on it. I'm surprised it is still prescribed. Evil drug
    Swap to Gabapentin
     
    Nagraboy, Frizzy and chartz like this.
  7. chartz

    chartz If it’s broke fix it!

    I’ll talk to my neurologist about it then.
    My main concern right now is significant weight gain, which I hate.
     
  8. hifinutt

    hifinutt hifinutt

    ah thats great . hope it goes well . keep us posted
     
  9. hifinutt

    hifinutt hifinutt

    i get my hair cut at a hairdressers in babbacombe called that !!
     
  10. chartz

    chartz If it’s broke fix it!

    Thanks everyone.
    I’m still looking for someone with the same health problem.
    Anybody?
     
  11. wow&flutter

    wow&flutter pfm Member

    Your mention of Myelitis reminded me I had a myelogram and a spinal tap in my teens. As you said I found the tap painless but a little unnerving. The myelogram left me with a shocker of a headache though ( I was warned about it before hand and to stay upright!).

    A quick online check it appears the modern MRI has done away with this test which is good news.

    I’m +1 for Gabapentin, not sure where I’d be without it. It certainly put the brakes on the pain killer escalation route I was heading on and I’m really grateful for that!
     
    Last edited: Jul 4, 2021
    chartz likes this.
  12. simon g

    simon g Older, wiser but no longer retired

    As you probably know, Myelitis is an inflammation of the spinal cord. It is usually a symptom caused by something else. You certainly need to get a proper diagnosis as soon as possible. Always feel comfortable seeking 2nd, even 3rd opinions.

    Your urinary problem sounds neurological rather than an enlarged prostate. With the latter you would still feel,the urge to pee, but have difficulty doing so. This needs sorting now. Urine retention can be very bad news indeed.

    In tne UK there is a charity/support organisation that has produced a FAQ sheet. This might be of some help.

    https://www.myelitis.org.uk/uploads/1/5/8/2/15824690/tm_faq_-_final_v2.pdf
     
    chartz likes this.
  13. mikemusic

    mikemusic pfm Member

    @chartz - Sorry. Should have said if not clear.
    Come off Pregablin with medical advice - as soon as you can. Think you have to wean yourself off, stop, then start Gabapentin or similar
    Your neurologist may have an exact and hopefully short time limit for it.
    The longer you are on it the worse the withdrawal
    All the best sorting
     
    chartz likes this.
  14. chartz

    chartz If it’s broke fix it!

    Thanks for your advice.
     
  15. docstocker

    docstocker pfm Member

    Pregabalin itself can inhibit micturition.
    The problem with gabapentin is that the effective dose is likely to be close to a dose that causes side effects. Don’t increase the dose too quickly
    The best use of pregabalin is to try to restrict to a low dose that helps a bit and avoid the temptation to increase in search of greater effect
     
  16. Frizzy

    Frizzy Liberal anarchist

    Having had a horrible time on and coming off pregabalin, stop ASAP.
    In USA there are numerous lawsuits and several class action suits against the manufacturers for withholding their own research confirming its exceptionally addictive nature and withdrawal symptoms that are similar to opium withdrawal.
     
  17. mikemusic

    mikemusic pfm Member

    All the best.
    Try to look forward to the benefits and get the damned muck out of your system.
    The boss used to be on Morphine patches and came off them cold turkey, a struggle
    For her pregabalin withdrawal was worse (after being on it for years, less time on less withdrawal symptoms)
     
  18. flutteringwow

    flutteringwow Platinum Ears

    Pregablin is akin to benzo withdrawal. It can take years of some pretty horrendous symptoms before the body and it's receptors heals from it. Gabapentin is just as bad. Any drug that alters the gaba system is hell on earth to escape. Yet, we don't hear about this in the leaflet, or its played down (few weeks withrawal blah blah)..because you know, might not be able to sell pills then.
     
  19. Chops54

    Chops54 pfm Member

    I was on gabapentin for a long while. It did bugger all for me for so I told the doc I didn’t want it any more as I thought it a waste of resources but six months later the chemist was still sending me the stuff :(
     
  20. mandryka

    mandryka pfm Member

    How are you?
     

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