No announcement yet.

1st relapse in 10+ years, not nice.

  • Filter
  • Time
  • Show
Clear All
new posts

    1st relapse in 10+ years, not nice.

    I really thought I was one one of those MSers who had found the Holy Grail with Copaxone/Glatopa, in the 15 years or so I have been jabbing myself with Copaxone, my disease activity seemed to diminish gradually, to where relapses became a "bad patch" and I had no discernable (sic) increase in disablilty.

    In fact I went back to work 3 years after my DX and held a somewhat demanding job up until my retirement in April of '14. La dee dah. I even bought myself a nice big touring motorcycle and made plans to just have a great time.

    Then, in October, I unraveled, big time. It started off with some minor urinary retention, then severe brain fog, then a misdiagnosis by my primary, who put me on Ciproflaxin. It was all downhill from there. Really bad constipation, urinary retention, persistent dull lower back pain, worse brain fog.
    On top of all that, my BP meds were potentiated by the Cipro and Flomax, I was bouncing around 95/50 and could barely stand up without the room spinning around.

    My promary then sent me to a urologist, a nice guy, who said my "dip stick" test showed no sign of any bladder, kidney, prostate infection, and an ultrasound showed my bladder OK, but he said finish the Cipro as stopping it could be lead to other problems. He said my other problems were likely caused by an ongoing relapse of " the de-mylenating process". He said he had seen many MSers with bizarre bladder issues that had no apparent cause, that they are part of the disease for many. He suggested ant-inflammatories like advil could relieve the "have to pee a lot" sensations. They sort of do.

    Off to my neuro, who gave me the impassive, dispassionate neuro look and advised me to treat the symptoms and hang in there.

    Now 3 months later, my BP is leveled off at 115/60, the brain fog and fatigue has abated, and I am about 30% better in the "constipation dept."

    But all that drama aside, all I can say is "What an ugly, mean disease this is". I am glad that I am at least gradually improving, and have become homespun expert on treating constipation.
    What works, you may ask?
    Here is what is working:
    I got so desperate that I searched the WWW and found what appears to be a quackish site that sells a Gutsense "Colon Recovery Program". My Ex GF said she is using it, and said it is really helping her. (She's on a couple of drugs that cause serious breakdown of natural biotics) and that it couldn't hurt to try it. Ok, I don't usually go for patent medicines or other nonsense, but what the hey? I was SO miserable I would have done anything, including the Yoga/Jumping jacks and other silly stuff I found on the web.
    When the package came I followed the course, and I don't know if the supplements stuff does anything, but this thing called Hydro-C works like a charm. After literally drowning myself in prune juice and fiber-based stuff, I wasn't getting anything but bad gas, bloating and very weird BMs.
    Hydro-C is basically a lot of Vit C in a powder with some other stuff, and you drink it when you get up. Within a couple of hours, boom, your done. No bloating, and if you "tune it" to your metabolism you don't get too "loose in the caboose" either. One thing, it can take a couple of hours to move everything so I have to get up early on days when I have plans. It's not a laxative, and vit c is not toxic in moderate amounts, so it's not something I am worried too much about.
    I got another recommendation for something called "Dr Schulze Intestinal Formula #1", so it's sitting in the kitchen, waiting for me to try it. But since the other "quackery" is working, I am going to hold off on that.

    I think for the most part, my relapse is waning, and I am hoping that the residual issues, like some lower back pain and the constipation thing will totally resolve.
    Ok, longest posting, ever!
    Love and hugs to everyone this holiday season, however you celebrate or don't celebrate it.
    Jim S.

    Oh, and one more thing...

    I forgot to mention, like always, that there was one other thing I tried, and I really did work, most of the time, but not all the time.

    When you get up in the AM and before you take any meds or eat, drink anything.
    Add the juice of a whole half lemon to a glass of warm water, like 8-10 ozs. Drink it down. Then stay vertical for at least a half hour. If you can, walk around the house, bouncy-ish.
    If you can't walk, just remain upright and it should work.

    It should produce results pretty soon, like within an hour. If not, you will have gotten a good does of Vit C and should be well hydrated.
    Jim S.


      And this..

      I see that it's not possible to edit a posting here...
      So I am using the reply function to list the ingredients of the previously mentioned product, "Hydro-C"
      Serving size 1/2 teaspoon
      Amount Per Serving
      % Daily value
      Vitamin C from calcium, magnesium, and potassium
      ascrobate/ascrobic acid complex) 1175 mg 1958%
      Calcium from calcium ascorbate/carbonate complex 225 mg 23%
      Magnesium from magnesium ascorbate/oxide complex 125 mg 31%
      Potassium from potassium bicarbonate/ascrobate complex 40.5 mg 1%
      OTHER INGREDIENTS: Citric acid and rose hips.
      CONTAINS NO yest, corn, wheat, gluten, soy, dairy, sodium, starch, sugar, wax, artificial colors, preservatives, or flavoring.
      By the way.....
      What I was using before I got the Hydro-C was a 12oz glass of warm water, with the juice of half of a whole lemon. I had this right when I got up in the AM, before anything else. Then just ambled around until boom. It worked about 85% of the time. Pretty reliable. When it fails, at least you got your Vit C and some hydration to start the day.
      \Back to the Hydro-C

      So Hydro-C is really just a mixture of things that are often prescribed to help constipation. Vit C Calcium, Magnesium, Rose Hips. It produces a slightly fizzy liquid that is not unpleasant, although it's not something I would drink if I was just thirsty. I prefer lemonade or near beer....

      by the way I am NOT associated with the Gutsense people, and this is not a spam or whatever.

      Hoping everyone has a unconstipated New Year.
      Jim S.