Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Stroke to the Pons area; psoriasis.

Discussion in 'General ME/CFS Discussion' started by guitarmary, Jan 28, 2016.

  1. guitarmary

    guitarmary

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    Hello Folks,

    It's been some while since I last posted, but I didn't forget you.

    ==
    I've looked through a few of your posts and do want to add a few bits relative to multiple posts and psoriasis.

    Geographic tongue is an uncommon type of psoriasis, as psoriasis does not usually affect the mucuous membranes. The operant word there is usually. It usually doesn't affect the interior of the nose either. But mine has done both and yours can too.

    Psoriasis can be much worse than you can imagine by what it usually does. Often it accounts for arthritis, but the interior inflammation it can account for eventually is even more dangerous. Many people with long-standing psoriasis need to have multiple heart valves replaced. I'm in that condition now.

    The best things I've read about psoriasis indicate that you should eliminate grains from your diet at a minimum. I did that until I had really bad gallbladder problems and went back on a standard diet.

    ==

    The other reason to post is that I want to mention my theory that some folks here might have had a stroke to the pons area of the brain. For sure I have had one, verified by CT scan and then a MRI of the brain.

    I'm also very sure that I've had more than one stroke to that same area of the brain, because some of the symptoms were identical to what I experienced in October, and also likely in July of 2014 (I sort of think I recall the date but it might have been July of 2013).

    If you go to bed one night and you're functioning about the same as always, at least in the relative recent past, but wake up the next morning feeling that you must have gained 100 pounds overnight or something like that, that's how you feel if you're lucky enough to still be semi-functioning.

    That symptom was unmistakeable. It's a strain to get your muscles to work with a stroke to the pons area. I kind of think that it often affects the heart muscle too. (My ejection fraction went from 30% one year ago to 20% this January. It seems like it hit me overnight in October, the same time I happened to see the hand ortho doctor for a change in hand sensitivity.) I also have had chest muscles issues and bladder issues with the most recent stroke.

    My cardiologist scoffed at the idea of chronic fatigue syndrome a year and a half ago.

    If I hadn't had extra symtoms this time with speech (not pronouncing words well or easily), I likely would not have called the doctor, who sent me to the emergency room.

    The point: some of you could be suffering the same way I suffered thinking that other things (there are plenty of serious issues for me) could easily account for my tiredness. I never in this world thought STROKE. But now I know that I had them.

    Bottom line: it wouldn't hurt to try taking an aspirin every day. You might also try taking Lipitor or a similar anti-cholesterol medication (though I had a terrible time with that and have had to skip that strategy). Just in case you might have had a stroke, to make a repeat less likely.

    By the way, I notice that multiple people here have had trouble typing correctly. I've always had a very few typing errors - nothing remarkable and easy to correct. But I've struggled since my stroke, to put it mildly. Corrections are difficult, there are so many errors. My handwriting, once rather easy to read, is awful now. I'm expecting the bank to start worrying about an imposter signing my checks...

    I may not have anything else to post. Google stroke to the pons area of the brain and you'll pull up some stuff that will seem familiar to some of you.

    Best wishes, Mary
     
  2. roller

    roller wiggle jiggle

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    when i was 20 (+/-1) i had something weird.

    in the morning, while crossing a street (just 50 meters from the house), i couldnt walk anymore. actually, i couldnt move at all anymore. i was just standing there. i dont remember for how long, perhaps a minute that felt like 10 scaring minutes.

    today im wondering too, if this was something like that. but i cant say, there was anything else unusual before/after.
     
  3. guitarmary

    guitarmary

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    Hello roller,

    I'm no expert on stroke (!) but this doesn't sound like a stroke to me. I have no idea what was going on when that happened to you.

    I have never had any problem in walking once I decided I was awake enough and ready to go. Doubtless there have been plenty of times I've been slow to move that I could have moved faster if something like a fire had me in a hurry.

    The symptom I'm talking about doesn't imply that you can't move at all. Just that as you move one foot after the other, your body feels suddenly much, much heavier than it did a few hours earlier, when objectively you weighed about the same. The difference in how heavy you feel is startling and unmistakeable.

    Best wishes, Mary
     
  4. Wayne

    Wayne Senior Member

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    Hi Mary,

    Thanks for your post. Since I have a history of psoriasis--not at the moment--I'm interested in doing the google search you recommend.

    Just a couple things in case you might be open to alternative therapies. I take small doses of DMSO every day, and consider it good for many different things. One is to not only prevent a stroke, but to have on hand if I were to experience a stroke. It works as well (1-2 oz.) as the drug they give stroke patients as soon as they realize they've had a stroke.

    Also, niacin is very good for lowering cholesterol levels and for improving circulation in general. There's a reason people experience a niacin flush when they take certain amounts. Also, vitamin C is perhaps one of the best supplements for improving the strength of blood vessels of all sizes. Many people think heart attacks and strokes are primarily a result of the weakening of blood vessels.

    I went through a phase once where I was experiencing numerous nosebleeds. I started taking 2-3 grams of vitamin C per day, and they were history within a week, never to return.

    Thanks for posting! :)

    Best, Wayne
     
  5. guitarmary

    guitarmary

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    Hi Wayne,

    I really appreciate your post and took action based upon it. I'd seen mention of DMSO previously but never got around to investigating it.

    This room I'm sitting in contains a veritable cornucopia of supplements. I'm not certain that any supplements have made huge differences except for taurine, but I do take what I can of that which seems the most important at the moment - while aware that there are limitations now as to how many supplements I can take because of gallbladder and other intestinal problems.

    One supplement I read about is taurine. (Read about in a supplements book by Dr. Robert C. Atkins: the Vita-Nutrient Solution. I still do recommend the book to others.) Taurine helped me noticeably with edema. Not a cure, but a cheap help that as far as I can see does no damage.

    So I am into at least trying a supplement with some hope of effectiveness for some use or other. I have many needs, so if supplement X doesn't help me in some way, I tend to give it up, maybe too fast. It does sound as if DMSO might work quickly to do whatever different things that it does?

    I've been reading a bit about it at Amazon, and almost bought a book on DMSO. In the end, I didn't get the book - I am overflowing with books as well as supplements - but did buy the supplement. Also some MSM combined with vitamin C. I appreciate the information you have furnished here and will go with that.

    MSM is supposed to be derived from DMSO. I never noticed a difference in taking straight MSM, but I have intestinal problems and the kidney specialist thinks my absorption is probably poor. This DMSO can be applied to the skin (although that's off-label) and shouldn't have the absorption problems that other supplements might have.

    I do keep Flush-free Niacin 250 mg. I've taken it sporadically, but now that you've reminded me will do that every day.

    Since my stroke I've also taken Ginkgo, 500 mg., each day presuming that might help and at least is unlikely to do any damage.

    Before my stroke I was taking 450 mg. of rutin daily, along with horse chestnut 350 mg. total, standardized to 20% aescin. For some reason I've had a feeling not to take them right away - don't know why exactly - but maybe because they blew 5 different veins on me in the hospital, it must not have been doing a good job at what it was supposed to do in the first place. It has been two weeks now, though, so maybe I'll start back in.

    I have had terrible nosebleed problems, and daily chronic nasal congestion problems from a combination of clotting and psoriasis. Straight psoriasis in the nose can be handled. When nosebleeds enter into the picture, it's tricky trying to unblock things enough to breathe. With altered finger sensitivity, it's gotten even worse. I'd love, love, love to find a fix!

    I've taken all kinds of vitamin C's, including liposomal, but never took them consistently enough to really test them out. I'll do better at it now.

    Vitamin C is believed by some to be good for heart disease if it's taken with a couple of other things (that are in the kitchen right now but I've forgotten their names at the moment)... so that's another reason for me to take vitamin C.

    Wayne, thanks so much for posting!

    Best wishes, Mary
     
  6. guitarmary

    guitarmary

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    Hi Folks,

    The name of the two supplements to take with vitamin C are L-lysine and L-proline (for avoiding heart problems). They were Linus Pauling's idea.

    Best wishes, Mary
     
    roller likes this.
  7. Wayne

    Wayne Senior Member

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    A quick note on DMSO. Wherever applied, it reduces inflammation and improves circulation (and healing). It is also a very powerful antioxidant, and anti-microbrial. If it was a patented drug that cost $100,000 a pint, the medical journals would be filled with articles extolling its virtues.​


    I started eating a greater variety of fermented foods this past year, which has helped with my own gb and intestinal issues. Supplementing with malic acid also seems to have helped.

    Supplementing with iodine seems to have helped even more. Most people are deficient in iodine, and the intestinal tract is an area that should normally have high levels of iodine to help protect it from pathogens and to "coat" certain proteins so they don't initiate autoimmune responses. ​

    I hope you're having a nice weekend. :)

    Wayne.
     
    Last edited: Jan 30, 2016
  8. guitarmary

    guitarmary

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    Hello again Wayne,

    I'm learning a lot from you.

    I knew to eat fermented foods, but otherwise didn't know about your other ideas.

    I did a search on malic acid and got an eyeful. I've ordered some now, also some in combination with magnesium. I've taken magnesium but this might be a good combination to take together for the pains from fibromyalgia.

    Interestingly, I've always loved the acid taste of the most tart apples, and everything else tart. Maybe there's a reason to my bady's craving for that taste. (At least I'll tell myself that.)

    I've read Dr. Brownsteins' book on iodine and recognized myself there; not only have I never been a big table-salter, but I've been tested allergic to all kinds of ocean-going fish and never eat any fish at all. So now I do remember to take a small amount of iodine everyday, but I don't remember ever reading about the "coating" phenomenon. That's especially interesting.

    If only I'd been taking iodine all these years, then maybe I'd not have had so many problems. I don't really know how much iodine would be ideal for me, but I'm pretty sure I'm not taking too much at 12.5 mg most days. My doctors are plenty busy with me as it stands, so I've not wanted to bug them about an iodine test or anything else that could add additional problems.

    My IBS/gastroparesis/diverticulosis gut issues are definitely better now than they once were, but I'm pretty careful to keep those issues/fixes uppermost in mind, as the problems can be overwhelming when they are bad. I'm thinking that your malic acid idea will offer a noticeable contribution to the gallbladder issues too. Thank goodness for support forums!

    Best wishes, Mary
     
  9. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
  10. guitarmary

    guitarmary

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    Thanks so much, minkeygirl. I just read that thread.

    I do have DMSO now and have tried it once, but the various things I read about it at Amazon made me want to start out slowly, just in case, so I watered it down by maybe 50% - though I did apply it twice to both my hands and wrists. I felt no improvement anywhere, but you've reminded me to try it again at a higher strength.

    I bought a container of it in liquid form that's supposed to be 99% pure. (I wonder what the other 1% is?) The bottle does say that it's not for medicinal uses, but it's the same DMSO company that makes most everything DMSO sold at Amazon and clearly people are using it all the time for medicinal purposes, so I bought it anyway. No problems, just no results.

    I can see now that there's a doctor selling a product also, but I'm going to stick with what I've already bought for the time being.

    Best wishes, Mary
     

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