Thank you very much that is very interesting!!
Well I ordered hoperzine and fosfatidilsyrene... this whole minerals/vitamin and cognitive thing is sth I have to work out on my own since it doesn't yield much interest in doctors. Unfortunatelly I am still waiting for them to be delivered making me fear the damage is more and more permanently the longer it takes to counteract the effects of anticholinergics and antiphospholipids maybe?
By now I am on plaquenil too since my ANa was positive at 180 and speckled.
CRP has all my life been very high in me so I am very shocked for you guys this seems to be a reason to base treatment on? I have a history of lung and kidney infections, pleuritis, vasculitis, strange rashes (skin is a nightmare), side effects from pills beyond imagination, recurrent infections especially are the problems, low immunesystem, ... observable (has always been the case): white matter lesion, swollen glands almost everywhere, feverish (measurable), nystagmus, yellow in the side of my eyes, very low BMI, ulcers in mouth, small cysts in kidneys and traces of from what i can google is kidney damage in my urine troughout my life and also liver damage in my blood (hyperbiliburemia) and something else (unfortunately i need to look everything up because my brain is still not working...), a valve of my heart which works insufficient in the lowest grade, heart arhytmias, bradycardy, tachycardie, hemochromatosis / the oposit / low and high values of everything and then they disappear (C3, C4, leukopenia, trombocytopenia, too few RBC's which are too large and have the wrong forms (poikocytosis?), butterfly rash appears in the evenings the last years: didn't even realise it...
The explanation always was: when we screen every person, they always will have some abnormalities...
My main symptom stayed fatigue and muscle weakness. Many other things come and go (like diziness attacks making it impossible to stand upright let alone to walk) but I didn't even bothered mentioning them anymore unless they stayed for months or years.
Problem with CRP? Doctors never mentioned it and said it was a coincidence and even a small virus or little infection somewhere could mean an elevation so it had no diagnostic value, so it astonishes me that they would base treatment on that?
Tough I did come down with endometriosis and after removal of the lesions and cysts it went more stable.
Other side: this CRP is not heaven. I had once blatter infection with my urine being more pus than something else: no CRP rise, same with pleuritis.
So my kidneys, nor liver, not anything else has ever been "cleart". Actually i didn't know about anything cause i wasn't told about it, but some years ago while i thought i should find it i asked my medical files and got my hands on blood labs and scans which made me wonder??????
By the time I am showing symptoms - and i am showing them already (jaundicing eyes and sometimes serum also is yellow and it came also back as another colour lately but I don't even remember)
The reumatologist didn't think ANA 180 was convincing at first glance - but when she saw some scans, doctors descriptions and blood labs troughout the years she concluded that plaquenil could help.
Always had been having diaphragm pains and dyspnoe. I konw the diaphragm is related to pneumonia or pleuritis in my case. But recently Rx showed sth called "emfysematic chest: flattened diaphragm dooms and bigger space posterioanterior... making me freak out that there is still more to solve and I might have emphysema without ever having smoked a cigarette?? The pneumologist didn't mention anything of it, just that he wanted to see me again in 6 months to see if the medication had any effect: I felt like he looked at me like: please you don't have anything serious and I give you the medicine but I don't expect we should make this cost for you (of salbutamol) because it is more imaginary than anything else... On the other hand the nurse made immediately clear my tests were aberrant.
now (but i am in a bad dusty environment here cause of a large construction site, but in Belgium you are always in a high polluted area cus where i permanently live is close to a very busy motorway...)
GP were i temporary live says i need someone who coordinates my case and one pharmacist who has an overview of what I take etc. The best effort so far in finally getting some health care...
All of this sounds so much like a hypochondriac i am very aware, and typing this its agitating me because it feels like my body is devastated - but it is true
Now I have a yellow spot in my eye, which was burning and hurting extremely: no-one can tell what it is ...
Must say the plaquenil made some changes I can see so far:
- less fatigue, but my fatigue already improved a lot since vitamin baxters - even though no apparent shortage
- vit B injections: muscle weakness is partially gone
- stifness of joints is still there but the pain is clearly less, though i will only be able to judge that well when the weather becomes humid
- must say I have more trouble sleeping - I slept very well before (which has not at all always been the case - so I still suspect me to have - at least had - CFS/ME)
I hope for the plaquenil to make everything more stable and not to have alerting or scarying blood values or symptoms anymore (like 2 times in my live i went to hospital for suspected trombosis. But with two false negatives one thinks: whatever I feel, it obviously doens't make any sense - so I whatever warning signal I just stay in my bed and will cope with it. But having SLE, puts things in other perspective. I would like for doctors to tell me are there any risks short term which I should be suspicious for? (But I think they will reason that I'll find my way).
Okay well now I sum up I realise the plaquenil didn't do much for me yet...
I must say I stopped because my eye experience and thinking it could be due to plaquenil.
After restarting: my fever never went away again and I do still have it.
Also must say that one hand I feel i will be taken more seriously, other hand I am fearful that there will be still scepticism. The reumatologist I saw now, wanted me to track, registrate and prove everything like skin rashes, temperature, scans, ... because she would only take visible things into account, but i must say
What I just want and hope from health care for me, is not per se getting the best treatment straight away, but if it indeed is lupus, I would like to now what damage has been done, and how to prevent further damage so that I can sustain life quality. Or even improve it. And what should I do / how to live to make sure I don't do any further harm?
So instead of what it seems to be now like oh your skin is not yellow, your blood indeed is abnormal but nothing trough the roof, i don't want to be there when they are trough the roof and then we will admit you and do workup and take your case serious and look for solutions, but I want to prevent me ever being on that stage...
Also with my low BMI (±15) and immunity problems I am afraid like @Gingergrrl
mentioned any heavy treatment - which includes imuran and rituximab - will kill me straight away.
Though on the other hand i read lupus is mild in caucasians and not devastating like you organs go into failure and anything. On the other hand I feel like i am in the first part of my 30ies, my blood clearlly show abnormalities in terms of organ functioning, I would like a doctor to have a closer look so at least I know where I am at now to see after 2-5 years how things changed.
But untill now I feel my GP here takes this serious, but I am afraid of the care at home in the place where I really live because there is no universitary hospital close and I doubt if they have much experience with lupus patients - or even not make a fool out of me.
When it comes to cognition, I also wonder does this ANA cross the blood brain barrier and is it possible that the lupus did affect my neurological state? If so, why a lumbal punction was never been done?
Unlike most of you, I don't dare to ask for tests or treatments. Being taken seriously if you are very slim and not good looking is already hard enough and I feel you insult their knowledge and expertise upon doing so. Recently i asked a tilt table test to establish my pots to my gp but he reacted negatively that this test was inhumane. For me I feel like everything which is documented, will help my case.
When not documented, it doesn't exist in medicine and is a make-up story of a sick hypochondriac and all you get is yawning or another insult. For me this POTS i can live with it, but the trouble is I can't tolerate standing upright for long or doing walks in summer because my legs become so heavy and painful, actually making me immobile troughout the summer cause it really is unbearable.
(I didn't even mention the dyspnoe when I start to have a walk, which I always thought and was told to be a consequence of the fatigue, and not the other way around...).
I just want to start my life (and hopefully not end it). I at least want to have one before I die because I never did really live since I was 15-16 which lots of us will recognise....)
I can forget all this and distract myself but when writing about it I feel a panic taking over... especially when I read here people get more complete treatments / checkups / follow up care and realising where I live there is not really a great health care system installed and things are easily overlooked. And it is all so fatigueing to go trough all that (and stressing), when my condition gets bad (i must say in terms of fatigue that apart from the fact that i am devestated now because the stress kept me awake it is better, but how long will it stay that way?) I won't have the energy to go trough appointments and everything anymore, I just would stay in my bed because caring for food, washing and everything already is enough...
Btw still unclear to me if "my doctors" "believe" in the lupus but judging from a diagnostic scheme I found I should have got the diagnosis years ago since all my screwed blood work (but would be too small differences so was thought to be of little or no clinical significance - something I understand of course but what when the patients experienced symptoms all this time? :-/ I thought that changed things, at least if you don't think this patient is letting his phantasy go into your consultancy room? ) and scan results. But it seemed that a positive ANA (first i thought this was not positive) changes everything?