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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. B

    Worrying cognitive decline / impairment drug induced reversible?

    My neurologist could only confirm what I already noticed so MCI ... No solutions, nothing... Piracetam, citicholine and stuff do enhance depressed mood. If I stop it (I had to do so for PETscan) this down feelings go away. So I can chose now between being cognitively messed up completely and...
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    Worrying cognitive decline / impairment drug induced reversible?

    Just for the books and the sake of registrating it somewhere in case someeone might be in the same scenario later -which I profoundly hope will NOT happen... I took 1200mgs of piracetam today and combined it with 125mgs of fosfatidylcholine (splitted the capsule of 500 in half). Headache stayed...
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    Worrying cognitive decline / impairment drug induced reversible?

    I really understand how depressing and heavy the physical impairment part of our disease is. I was in it to for many many times and I never turned back to normal capacity and it is very obvious when I am among others I am the weakest one in terms of psyhical capacity. But however if I laid in...
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    Worrying cognitive decline / impairment drug induced reversible?

    How long where you taking the medication you are talking about? To me from what I have learnt: antidepressants MAY BE anticholinergic Fat burner: no idea what this can be. Alcohol as mentioned is not good for brain health, it is the same as benzos as mentioned. I unfortunately took them too...
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    Autoantibodies and ANAs

    @Gingergrrl wow didn't realise you have been this ill. What a way you have sough yourself up too... In Belgium and I think other EU countries IVIG is not reïmbursed by the health care system. Maybe in very extreme cases were it is life or death that a special fund may donate some money. In...
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    Autoantibodies and ANAs

    Update on possible lupus diagnoses as CFS/ME for 18 years so gone without treatment: Still not symptomfree. Eyes got better tough. Taking in plaquenil not always systematically. My health is not better, not worse (general condition), but some problems got worse esp. the lung problem and I also...
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    Autoantibodies and ANAs

    Sorry haven't been on this forum for a while due to health research / issues. It's indeed unbelievebale. Probably everyone was so stuck in the psychiatric problems (because I had problems with uni as a consequence of an operation) / CFS reasoning on one hand and the other doctors just don't...
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    Worrying cognitive decline / impairment drug induced reversible?

    Update - hope someone can learn from this or someone can help me to advance to the next stage into this (happily now I found a neurologist who probably wants to help me and go down the pathroad to investigate this issue): I improved making it at least possible to scrutinise literature on paper...
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    Choline causes brainfog

    Another update: - Fosfatidylserine 500mg & huperzine A -> huge headache - Huperzine A alone -> okay as far as I could notice - I thought I took the combination of the above again but I am not sure. - Lecithin 1200mg: take this daily for months -> no problem Now I orderd the much more expensive...
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    Choline causes brainfog

    I abuse this by asking does someone here maybe know more about this problem I am describing? https://forums.phoenixrising.me/threads/worrying-cognitive-decline-impairment-drug-induced-reversible.77198/ --> extreme cognitive decline after anticholinergics -> which is basically what can be...
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    Worrying cognitive decline / impairment drug induced reversible?

    I still sneak around here hoping that anyone can offer a clue for what to do in our situation. As written above I got myself phosphatidylserine and huperzine A. The strange thing is that after stopping the anticholinergics and also betmiga (which isn't even an anticholinergic but still is...
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    Autoantibodies and ANAs

    Thank you very much for your information! I am starting to think that my problems will be of similar natures. I just did testing and indeed the values were nothing they had ever seen before and they let me do the test all over and over hoping that they would be able to make sense out of it. :-/...
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    Worrying cognitive decline / impairment drug induced reversible?

    To my astonishment I discovered these anticholinergic drugs, especially the ones I have taken which are from the highest active classes of drugs, are neurotoxic... not to say the most neurotoxic drugs on earth and all took all of them. Cause my blatter wasn't resting easily I switched between...
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    Autoantibodies and ANAs

    Wanted to share a bloodlab that has been made last month. I am quiet shocked same story as usual: no doctors communicated anything with me and I just had to found it myself (apparenty I didn't look in the right places): - leukopenia, neutropenia, hyperchromic macrocytair anemia and...
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    Worrying cognitive decline / impairment drug induced reversible?

    Well I complaint to my doctor (GP as well as neurologist who both are younger than myself (34 - them I have aged since this disease hit me :( ). Both told me as they aged and after stopping university studies they noticed too it got much harder to learn new things. Tough I hope for them and am...
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    Worrying cognitive decline / impairment drug induced reversible?

    Tell me about it ... Even on facebook I used to write posts which I would be congratulated for from opponents and eh the other site :-/ and not the least people by far in my region so ... i was admired because of these skills. I would like to retrieve all those texts - hoping that they will...
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    Lung & breathing trouble

    We're almost one month later. I tried the sea, now even the forest ... but as houses are heated here by burning wood or old fossil fuel installations, my problem isn't really disappearing. Now the pattern is getting more clear and seems to make "cycli": - stiff chest / difficulty expanding...
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    Misdiagnosed Multiple Sclerosis (MS) as ME/CFS?

    I have one white matter lesion myself - the origin is unknown. Showed up on MRI already when I was around 20 or 25 years old (don't know when for sure). I only did find this out this year, I was extremely shocked since some of my doctors or specialists said "rule out MS" and I said it was...
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    Misdiagnosed Multiple Sclerosis (MS) as ME/CFS?

    Your post goes ways back I see but your symptoms do not necesarrily indicate MS, MS can be ruled out by MRI and/or lumbal punction (and or spine MRI). MS is nothing that can be missed actually (I mean once the right test has been done). It is not the result of symptoms as in many chronic...
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    Worrying cognitive decline / impairment drug induced reversible?

    Again it is very similar to my story: I do recognise things... also it is much more easily for me to retrieve things from "before" than things I did recently learn (which is quiet scary since that is similar to dementia - not that I want to shock you with this because it is highly improbable...
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    Worrying cognitive decline / impairment drug induced reversible?

    Wow thank you very much!! I'll write this down: nagalase & toxoplasmosis. Actually I am shocked reading it: Poor coordination, eye problems (!!!!) something I do deeply recognise. To make me even more look like a fool: it is very probably a cat kept me company during a lot of time (sleep...
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    Worrying cognitive decline / impairment drug induced reversible?

    Thank you very very much for your reply, all the replies and supporting words are highly appreciated. :) Well at least some good news: - i still keep training my brain (by challenging myself to find certain words - maybe also in other languages: I used to speak 4 and was learning the 5th one)...
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    Worrying cognitive decline / impairment drug induced reversible?

    Wow, are you an MD? That is a very high level of knowledge you are displaying here - i dream to have it too. Very interesting, never heart of nagalase, it is really the first time I hear it. I also do realise if my current GP is going to stay my GP I should be more demanding, insisting, more...
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    Autoantibodies and ANAs

    I can answer this too I guess: got 400 since start of august but since my weight I am overdosing (300 will do). Though cutting the dose makes the symptoms more prominent Pros: - Fatigue disappeared mindboggling I would say around 60-75% though I must say I won a lot the last year by...
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    Autoantibodies and ANAs

    I don't seem to learn the quoting so I am going to do it straight: Thank you @Gingergrrl for your information and I am very sorry for the clumpsy communication I did before that probably was from a dysfunction emotional point of view based on the bad health care experience (or absence of it)...
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    Worrying cognitive decline / impairment drug induced reversible?

    I recognise a lot in your story. It seemed that my intelligence was weakening by the minute, but because my interests seems to change: baking, gardening, cleaning the house and stuff (of course not that we have the energy to make all our plans reality) I didn't notice the decline was so extreme...
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    Lung & breathing trouble

    Thank you it is unbelieveable indeed because I am in such pain and no-one ever took the time to just listen to my symptoms, get trough them with me, check for explanations and help me for relieve. I really don't know what to do anymore. My Gp is to busy, ER will be too and it is now a chronic...
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    Eyes

    In 2007 i get an eye infection on the right, seeing almost nothing anymore (other eye is "lazy" so undeveloped) only cortisone treatment helps: unfortunately this is never reported. Ophtamologist also mentions eyes are extremely dry. It vanishes but still there keeps a strange watery appearence...
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    thin hairs and nails that split easily, a link to any connective tissue disorder?

    Try zinc, or keratin product treatment on your hair and nail creams. I have it too, like many others i am afraid though my hair tinned massive during a disease flare up of unknown origin.
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    Lung & breathing trouble

    Part 2 Why did I look into my own online file? I started to experience heavy symptoms and dyspnoe attacks and thorax pains all over the place and stiffness, esp at evenings, nights and mornings and night chills / sweats Salbutamol is not relieving. I go to ER in fear don't know how I can get...