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Thread: What set it off?

  1. #11
    Senior Member willingtocope's Avatar
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    So...the saga continues.

    Last CT scan ordered by my PCP in Sept showed a couple small kidney stones. "Don't worry, they'll pass. If you have any blood, go see your urologist", he says. I didn't feel the stones pass, but I did wake up two weeks ago with blood spots all over my underwear.

    So...I go see the urologist. He looks at the CT scan, says, "hmmm, may be your prostate...we've got some meds for that". I mention "C. Pneumonia" (sp?). Symptoms are similiar to MS, and sometimes causes bleeding. He says, unlikely, but lets do a culture just to be sure, and we'll hold off on the meds until we get the results. I say, great, and I notice we now have some internists here in this little burg, how about a referral. Sure, he says.

    So...I go see the internist. We go over my history and I describe the "psuedo-exaccerbations" I have. He says, "ever had an EEG?'. No, don't think so. So he mentions "Todd's paresis" and sends me to the big city for an EEG.

    I see him again next Thursday. tune in next week.

    So, I've got two doctors who are willing to investigate something other than MS. Either conditions may be treatable. Hmmm.

  2. #12
    Well, sheesh...it's about time, eh? Please keep us posted, I'm keeping my fingers crossed that at least some of what you're experiencing can be treated!

  3. #13
    Senior Member willingtocope's Avatar
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    Okay, second visit with the new doctor. EEG showed nothing remarkable. cardiac ultrasound was also okay...some minor abnormalities, but ejection fraction around 55% and, given I've had triple bypass, everything is functioning "more than acceptable".

    He agreed to double LDN to 4.5mg twice a day...and suggested trying Gabapentin instead of Zanaflex. I'll start the Gabapentin first...give it a couple weeks and then, if it seems warranted, add the extra LDN.

    Anyone have an opinion on Gabapentin vs. Zanaflex?

    He's really concerned about constipation, and the "discomfort" in my left side. He pointed out that nerve bundles being spread around like they are, the pressure could actually be contributing to spasticity in my legs. Last time, he RXd "Lactolose". I took it for 4 days, then woke up at 11pm Monday night and spent two hours sitting on the toilet. I pointed out this time, that since I'm still working, I need something more predictable. He suggested i half the dosage, and try again. We'll see...

    At least, he listens. And, I get the feeling he's actually trying to help me get thru the day. Again, we'll see..

    I can't report any actual improvement at this point, except I have gotten myself out of bed the last 4 mornings. Baby steps, I guess...

  4. #14
    This new doctor sounds like a winner. He's able to communicate and willing to think outside the box - a rare find, in my experience. What he says about constipation and spasticity make perfect sense. I don't know anything about the drugs, but when you find the right balance of meds I'm hoping your spasticity will improve a lot.

    Miralax seems to be one of the safest and most dependable laxatives around, and it's over-the-counter, too.

    It might take a few weeks to see results from the new regimen, as you'll be trying different schedules and combinations - it's wonderful you've found a doctor who will work with you to find the best approach.

  5. #15
    Senior Member willingtocope's Avatar
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    Actually tried Miralax about a year or so ago, with no real effect. Same with Citracal. Only thing that works about 70% of the time is about 4 oz of prune juice, then wait 4-5 hours...but, when it hits, my legs need to be in working condition, or I might not make it to the bathroom in time.

    I need something predictable....

  6. #16
    I know what you mean and wish that Miralax worked for you. Maybe you could give it another try...nothing ventured, and all that. The weird thing about MS (assuming that's what you have) is that it's so unpredictable and one can never be sure that what seems to work one day, will work the next. And by the same token, I find that I have to revisit issues and approaches frequently, because things that quit working in the past will sometimes be helpful again in the future.

  7. #17
    Senior Member willingtocope's Avatar
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    Well, here's my plan. A small bowl of shredded wheat every morning, with about 15ml of Lactolose. Its actually a "double sugar" and doesn't taste bad by itself...and hopefully the shreaded wheat will provide enough bulk that I won't have the trots.

  8. #18
    Sounds like a good plan. Are you keeping a notebook of the regimens/dosages you're trying? I find it is a good idea to write things down when I'm trying something new (along with the results, at some point)...I used to think I'd remember things like that, but nothing could be farther from the truth! A "treatment diary" (not slavishly maintained, just brief notes) gives me a handy frame of reference and it can save time and energy when visiting doctors.

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