Old 11-17-2010, 03:25 PM #16 (permalink)
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Default Re: Spontaneous remission

Hi Laurel,

Yet again you are prophetic!

My GP today said "Polymyositis? I don't think so".

I am having tests done.

I hope your prophecy "back to work" comes true. I believe in you.

There is an interesting link on "I am with you", in the UK forum.

Take care

Graham
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Old 01-29-2011, 06:48 PM #17 (permalink)
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Default Re: Spontaneous remission

Hi Guys,

Further to my previous posts the consultants have reconfirmed my diagnosed as PLS & probable ALS and polymyositis is not a possible diagnosed.

I continue to see improvements in my legs, arms and lower back. I can now stand with ease but cannot step off and walk.

Details are here:
Build-UK Chat Forums :: View topic - I am with you

Another report of spontaneous remission is here:
Build-UK Chat Forums :: View topic - Fish is it a benefit in MND

and here:
Build-UK Chat Forums :: View topic - Improvement

Any other reports, no matter how trivial are welcome. Tokahfang, how are you doing?

Best wishes

Graham
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Old 01-31-2011, 03:27 AM #18 (permalink)
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Gastroparesis is kicking my butt! Whether it is keeping me up all night with nausea or just starving me, it is definetely the toughest health challenge I have ever faced. Hiking and mountains in a wheelchair was easier than this!

But I think I'm doing ok on the dignity part so far, and I'm trying to get my affairs in order best I can. Whether I end up getting help with it or not, my family should be good to go.
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Old 01-31-2011, 02:03 PM #19 (permalink)
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Sorry you are going through this nasty condition, Becky. I cannot imagine how awful it must be having nausea so much. It's so debilitating both physically and mentally.
What can they do about it ? Sounds ominous you getting your affairs in order!

Aly
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Old 01-31-2011, 02:37 PM #20 (permalink)
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Hi Tokahfang,

We say in the UK, "it never rains, it pours". Keep rising to the challenge my friend. I hope your family and doctors can help. There seems to be options.

Best wishes

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Old 01-31-2011, 10:16 PM #21 (permalink)
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Default Re: Spontaneous remission

My husband was diagnosed with Als 4 years ago lived with it a year and they told him that he was getting stronger it wasn't Als, then today they told him he had been in remission and it is ALS. He was getting stronger and walking better but now its getting worse.
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Old 02-01-2011, 12:02 AM #22 (permalink)
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We've learned from out neurologist that with ALS you can have good days and bad alternately, but that when something happens, it cannot improve... it stays. You can have plateaus of progression, but if you lose something you can't get it back. Here's hoping and praying maybe you have something else than ALS... at least something that will give you better quality of life and lifespan.
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Old 02-03-2011, 05:33 PM #23 (permalink)
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Hi Marjorie,

Thank you for your kind thoughts.

I can be very clear that my diagnosis is PLS and probable ALS after extensive testing over 3 years.

Best wishes

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Old 02-03-2011, 07:35 PM #24 (permalink)
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I think that it is a spectrum thing, and that some people end up on the 10 percent slowest of progressing scale. While others sadly fall into the quick progressing, or most stay at normal progression. I do help things continue on this same line for you Graham..
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Old 02-03-2011, 09:30 PM #25 (permalink)
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Quote:
Originally Posted by Alyoop View Post
Sorry you are going through this nasty condition, Becky. I cannot imagine how awful it must be having nausea so much. It's so debilitating both physically and mentally.
What can they do about it ? Sounds ominous you getting your affairs in order!

Aly
They gave me a suppository for nausea, but it doesn't do anything for the other stuff. Basically a meal puts me in many hours of pain, I don't get all of it's calories, and oral meds get stuck behind it in line. Liquid stays down very poorly, even after a 12 hour fast, just a cup of water can regurgitate. So I'm starving really slowly, and I'm constantly dehydrated.

I'm hoping not to do anything melodramatic, but if they force me to wait till I'm emaciated and super progressed in the PLS for a feeding tube, I'm not promising I'll take one then. I figure when they cry uncle on the tube, I'll evaluate where I'm at and decide. But my diabetes doesn't like what my diet is doing at all, I'm starting to swing around, and in general decline. So I did up a living will and health care proxies and all, just to have the paperwork done. My family is all on page with me and each other, and it frees me of worry on those points.

In the meantime, there's a health advocate on my case, and someone bothering the local politicians, so if there's a way for me to stay workably healthy, I'll find out for sure. But I'm just taking it day by day, balancing lack of food and sleep (food takes away sleep), balancing food/sleep vs blood sugar, and not doing anything ridiculously torturous. The anti-nausea drug kills my ability to use pain killers, so I look at whether the nausea or pain is worse, and what my 6 hour outlook seems to be.

It's all really slow, mostly just crazily uncomfortable, so don't expect me to disappear anytime soon.
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Old 02-04-2011, 12:19 AM #26 (permalink)
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You poor thing. If they did end up putting in a PEG, would the gastroparesis still be a problem? I would imagine that the problems would continue, unless they place the tube below the problem site?

If it could solve the problem then I suppose you would have the tube?

We has a very interesting speaker at our local mnd society support group, who spoke about the importance of having a living will for everybody. I was going to get right on to it, but as always never got around to it.

Best wishes
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Old 02-04-2011, 02:00 AM #27 (permalink)
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Not a PEG in my case - a jejunum tube, skipping the stomach and going straight to the intestines, which are working for now. (Keep our fingers crossed?) The problem is they have a tendency to sepsis, so it scares docs off. Sometimes they wait through multiple cycles of emaciation-paraenteral in hospital to livable weight-home to emaciated again, even for completely incurable problems.

Living wills really help if you do them well. No one wants to be the bad guy, and you don't want your family in their bereaved state to make the dude who said something the bad guy, either. Its much better if you lay it out in advance, set a little hierarchy of decision makers, and make sure everyone key has a copy so they can look at it and see, yes, that is what you wanted. Plus, they don't come up till you can't communicate yourself, so they don't take your choices away. I see it as a "get my family working together" tool. And it relieves my hubby that he's 3rd on the list of making tough choices, not 1st as the default would be.
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Old 02-04-2011, 02:07 AM #28 (permalink)
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There is a Parkinsons clinical trial running at the local hospital. They deliver the new drug straight into the jejunum through a tube, with a continous pump. The tubes have been a nightmare. They seem to easily move out of position, and a couple of the subjects did indeed develop sepsis and get very sick. So yes they are a pain( literally).
When I read what you are going through, Beky ,I am rather glad I am pudgy!
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Old 02-04-2011, 11:08 AM #29 (permalink)
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Becky,so sorry your having such a bad time,wish i could offer you something to help you out but all i have are hugs xx Ang
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Old 02-04-2011, 11:52 AM #30 (permalink)
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The facts are there, but honestly, my overall experience isn't as bad as it sounds. I don't like "picking my poison" every few hours, I don't like the pain or the sleep dep, but if you were to talk to me in person or the phone, you'd realize I'm not lacking in joy. I end most days grateful to have lived them. Somehow Jesus makes a lot of stuff that shouldn't be ok, be ok anyway. I'm actually pretty content - happy to wake up another morning, peaceful about the fact that'll stop sometime. But death is a comma, not a period, and the next world he's making sounds awesome. A city with 1600 mile long walls, livelihoods that aren't stolen, etc? I'm in!

Mainly I'm just pushing to get my husband, sister, bro-in-law, niece, and parents if possible, all in a financially stable living situation. I want them to be set up well to suceed moving forward, and enjoy the time I get here with them and our amazing friends. On paper our situation sounds bad, but the day to day is one I look forward to having more of.

Sorry to amazingly derail the thread, btw.
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