What do I do about my dementia? (UK)

Moof

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...someone was telling me off for flushing meds recently - bad for marine life apparently!!
They're absolutely right, although given the vast quantities of un- or partially-metabolised meds that go into the water treatment system in our urine, it might not make all that much impact! But if you don't want to take it to the pharmacy and risk being thought weird for diluting your medication, I guess it could be disposed of in household waste in any watertight plastic bags or non-recyclable bottles you're having to throw away.
 

caledonia

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Deva Iron-Free. http://www.devanutrition.com/vegan-multivitamin-mineral-iron-free.html I'm a vegan. I take 50mg iron bisglycinate 3x/week.
These could be counterproductive in terms of raising your B12:
Folate (as folic acid) 400 mcg
Vitamin B12 (Cyanocobalamin) 100 mcg

Reasons - both are the artificial forms and may not convert well to the active forms and/or block absorption of methyl forms.

There is a lot more folate than B12, which over time can cause methyl trapping. Or it could be immediate if you're already low on B12. This could cause a lot of symptoms - methylation controls over 40 major reactions in the body.

If you have mercury toxicity, the chlorella could be counterproductive in that it's a weak chelator. So it would loosen up some mercury, but not hold onto it long enough to get it out of the body. Therefore, it would redistribute in your body and brain causing various symptoms (memory and mood issues are two of them).

My suggestion would be to discontinue the multi for awhile (couple of months?) and see if it helps.

In general, vegans are at risk for developing B12 deficiency. It takes about 7 years for the body's B12 stores to be used up if you're not getting B12 from diet or supplements.

ps. if you want a specific person to see your reply, you should either hit the reply button and quote their message and reply to it, or tag them like this @caledonia . That way, they will get a red flag notification that you have replied to their message.
 

Moof

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How much folate is enough? My multivitamin has 400μg...
I don't really know how to convert IU to milligrams, as it seems to be a different multiplication factor for each nutrient! I take 1mg of methylfolate with each 1mg injection of hydroxocobalamin. That's possibly more than I need, especially as I eat leafy greens as well, but the brand I like just happens to come as 1mg tablets. All I know is that B12 needs folate as a co-factor in order to work, and as I had to have alternate-day injections for several months to get on top of my deficiency, it might have been difficult get enough folate via my diet to really kick-start things as quickly as I needed to at the time.
 
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Ta for the advice about supplements.

My "progress":

1. I tried reducing the pregabalin. The good news is that I discovered it is still working! \o/ It always did give me muscle tone; in fact, for a while, when it was really working, I was on a high dose that made my muscles stiff as boards all the time. So a couple of weeks ago, when I tried to reduce it, my muscles collapsed into trembling mush and I had a very bad crash. That would be the bad news.
2. I told the doctor there was no hope of my coming off the pregabalin and she accepted that. At the second meeting I told her my dementia was continuing to progress (I panic at social events now because I dont know what I should be doing) and she said I had no chance of a head scan while I was still on the pregabalin and the memry team would be unlikely to accept me. She did refer me to the memiory team so now I have to wait.
3. Someone is coming round to assess me for adult social care - hurrah!
4. I am filling in Lasting Power of Attorney forms at https://www.lastingpowerofattorney.service.gov.uk.I've also found West Cumbria Carers have a special service for this with different rates of pay. https://www.westcumbriacarers.co.uk/workspace/page-pdfs/42289-17-wcc-lpa-leaflet.pdf The only problem is thinking of things to request - better look for a thread on that...
4. People now think I am veyr rude because I don't respond to the things they say. I;m wondering if a badge or T-shirt saying "I Have Dementia" would help. Sooner or later (probably sooner!) I will also have to "come out" to the people I know, which is v embarrassing due to my age and is going to be especially difficult since I don't have a diagnosis. I am really worried about my remaining window of oppourtunity - like, if I don't tell my father soon, I might never be able to tell him because I won't know who he is...
5. Need to get on with will and PIP now. Get going, Cheryl!!
 

Moof

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Thanks for the good news / bad news update, and sorry you're still struggling. I've got to go out to an appointment soon, but whilst I've still got a few minutes, I thought I'd let you know that we found Dementia UK really helpful when we were going through the process of getting Mum diagnosed. They have a helpline and an email address that you can contact, and they were great. They really understand that simply getting a diagnosis can be a real uphill battle, and that people are often left in limbo for far too long. This is a link to their factsheet, and the contact details are at the bottom. It's well worth getting support from a service like this whilst you're still trying to work out what's going on, whom you should tell, etc, as they've done it so many times before.

https://www.dementiauk.org/wp-content/uploads/2017/07/Getting-a-Diagnosis-WEB-June-17.compressed.pdf

Edit: do always remember that your symptoms may not be irreversible – mine were due to severe B12 deficiency, and there are other causes too. Until someone actually confirms that they are caused by one of the dementia syndromes, there is still hope that you may improve. Hang on in there!
 
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alex3619

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Memory loss can be a part of ME. Dementia usually includes a loss of reasoning. We usually do not get that. Doctors do not seem to know how to diagnose memory loss in ME or what to do about it. I am struggling with this myself, though my current round of memory loss is probably due to steadily rising blood pressure. I also find I can retain ideas OK, but details and specific visual memories are gone.
 

Moof

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Memory loss can be a part of ME. Dementia usually includes a loss of reasoning. We usually do not get that. Doctors do not seem to know how to diagnose memory loss in ME or what to do about it. I am struggling with this myself, though my current round of memory loss is probably due to steadily rising blood pressure. I also find I can retain ideas OK, but details and specific visual memories are gone.
I agree, I struggle with this too. It's complex, but it's at least partly about insufficient energy. I've lost whole periods of months during severe relapses, but have noticeably less memory loss when my health is better.

I lost reasoning ability and lifelong skills to B12 deficiency, and being put through and failing dementia tests was incredibly frightening. The deficiency had only been severe enough to cause these symptoms for a relatively short time, and luckily I regained pretty much all of the facility I'd lost within four months of starting treatment.

It grieves me to think of relatives in my parents' and grandparents' generations, who developed premature dementia for the same reason I did (B12 malabsorption after h. pylori gastritis), but whose lives were just written off without any thought that it might be completely reversible with injections costing pennies.
 
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I read about "Flowers for Algernon syndrome" in Osler's Web when people took Ampligen, regained their intellectual abilities, had the Ampligen taken away again and lost them. Was the same for me when I went through remission (and relapsed) on pregabalin.

I found my blood test results (privately done!) from 2016: my B12 was only a little on the low side (238pmol/L - this was before I had all the injections) and my folate was actually too high (42.9nmol/L); this apparently is common in vegans. So at least it's not those.

I feel rather pessimistic now and suspect David Bell was correct when he said perennial low blood flow to the brain in ME causes it to atrophy. I've had very low blood pressure and OI for at least ten years and it's never been treated so...
 

Eastman

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...my B12 was only a little on the low side (238pmol/L - this was before I had all the injections) and my folate was actually too high (42.9nmol/L); this apparently is common in vegans...
Vegans are often deficient in B12 since it is normally not found in plants.

The B12 reading appears barely adequate but beware that B12 blood test results can be misleading. From this site:
The most common test is serum B12 - The reference range can be set as low as <110 - 900 ng/l in some parts of the UK. This is a problem as the test often misses desperately deficient people.
The serum B12 test, records all B12 in the blood, active and inactive (B12 Analogues), it does not record what is happening at cellular level.
The body cannot access inactive B12 and this can represent as much as 80% of the level showing in serum.
There are documented problems with the accuracy of this test, however many health professionals are not aware of this. Click here to read the NEQAS B12 alert.
A high blood folate reading can actually be the result of a functional B12 deficiency since B12 is required for cellular uptake of folate. See the detailed explanation here.
 
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Cheryl, so hard to hear your story. Plenty of good recommendations so I won't even touch any of that. I'll just tell you about my experience.

I'm 59 and have had "typical" senior moments - mostly the inability to remember words. When that began to happen more often and feel more intense, I began to be concerned. I began taking Citicoline which helped a little. But then, during internet research, I found this: https://vielight.com

Pretty interesting - especially the fact that folks with dementia showed real improvement. Their device is really expensive - over $1000K. It utilizes LED light therapy - red and infrared. Well, heck, I'm a big fan of LED light therapy for skin issues. I have several LED light arrays and use them all the time for skin lesions, sore muscles, pimples, anti-aging, and probably some things I'm forgetting.

I decided to try the NEAR Infrared light (NIR) from my device on my head for short durations - 1 to 3 minutes. I scrutinized the head placement on the Vielight device and tried to replicate it. I also looked at reference materials for placement: https://www.ncbi.nlm.nih.gov/pubmed/28186867.

I use my LED device at least 3 times a week, and have seen a huge difference in my memory. I can usually remember words again, and my brain just seems to work better, faster. LED light therapy devices are available on the internet for reasonable prices. Here is the device I use - just for reference as to what they look like: https://www.elixa.com/shop/660nm-red-850nm-near-infrared-combined/.

Maybe this can be useful for you!
 
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Hi, I will update about the memory loss stuff. (I’ve been told I cannot call it dementia since a specific disease process has not been identified in my brain.)

Firstly, to put it bluntly, everyone went bonkers when my memory loss became pronounced; they all started acting in incredibly bizarre ways, and that sort of carries on getting worse all the time.

As an example: I contacted the Alzheimer’s Society(they deal with various forms of memory loss, not just Alzheimer’s) and told them I really needed help and advice, so this woman came round. I explained to her that the thing my mother needed above all was for someone to sit her down and tell her that my memory was deteriorating and there was no reason to think it was going to get any better. (This has still not happened and I’m starting to accept that it never will; due to my mother’s own memory issues, she can’t take in the information.)

At first the woman looked concerned, but then her attitude started to change. (I think it might have been because I mentioned I didn’t have a diagnosis.) She stopped making eye contact and started to smirk. Then she adopted defensive body language (crossed legs and folded arms), grinned while staring into the corner of the room, and started saying things like, “When you say you can’t make a cup of coffee any more because there are too many steps in the process - well, that doesn’t sound like dementia at all! You’ve got to start taking a bit more responsibility and get back to doing the things you’ve stopped doing. Just make a list if you’re having trouble remembering something.” I started to explain that I always have about ten lists on my computer and phone which I can’t remember to look at and untold paper lists which I lose, but she ignored this and said happily, “In my view, there’s nothing at all wrong with you, and when you see the neruologist I bet he’ll say the same!” (This was true, worse luck.)

At this point my mum turned up. The woman said, “All you have to do to deal with your memory loss is put a whiteboard on the wall. Then, if you want to remember something, just write it on the whiteboard!” This was like pouring petrol on a flame; my mum looked ecstatic and started saying, “Yes, I’ve been saying that for ages! There is nothing wrong with Cheryl - nothing at all!” When the woman had gone she found a whiteboard and stuck it on the wall upside down. My care assistant and I had to spend half an hour cleaning off the old permanent marker writing and then my mother only wrote on the board twice in a year, so that was a glorious success.

That’s quite enough for one post. I will update presently. (I’m sure the whole Azheimer’s Society isn’t like that, I probably just got unlucky.)