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Hitman3161

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Everything posted by Hitman3161

  1. Hi Jan, Yes, and thanks. I will join later, but just from reading the description, it really epitomises the disdainful attitude for PANS/PANDAS in this country and the situation I find myself in now... Hopefully, in ten years or so with an effective paradigm shift in the medical community and a change in political and financial interests, we won't have to struggle so much... The sad thing is the research is out there, it does exist and will continually evolve until the point at which the mainstream medical community will be unable to ignore it any longer .
  2. I did previously mention this symptom else where, but thought it deserved special attention as it isn't typically associated with the Classic PANS/PANDAS form, and just because of how dreadful it is... For the past 4 or so years, during an acute exacerbation, one of the first signs of relapse is falling into a transient trance state (or staring spells). The episodes are usually preceded by a 'warning' - an abrupt wave like sensation originating from behind the eyes, resulting in a loss of attention and concentration. Now, here's where the matter gets more complex. My brother has an ASD diagnosis and a clinical history of suspected epilepsy - As a child he suffered a febrile convulsion and a fit, and was rushed to A&E on numerous occasions. After successive investigations involving EEG and a short course of anti-convulsants, the neurologist concluded that the line between ASD and epilepsy was a blurry one and ruled that the abnormalities shown on EGG could be better accounted for by AS. Up until a few years ago, I never experienced any of these worrying spells - the principal symptoms were always restricted food intake, severe anxiety (OCD) with behavioural regression. My PCP will never entertain the idea of epilepsy and I can't say there is a loss of conciousness during these spells - I'm still very aware of my environment. My question is can this be a sign of untreated PANS/PANDAS as new symtoms evolve with every exacerbation, or is it more likely to be psychogenic in nature? The reason why I don't believe it's seizure related is because there is no loss of conciousness, or secondary behaviour, like lip smacking... Whatever it is, it has a dementia like quality to it... very worrying 🙁 Hopefully some of you can relate...
  3. Yes, I have an ENT consultation scheduled for the 8th of august. As mentioned previously with contemporary practising guidelines it's very difficult to receive T&A without notable cause - in this case crupe, enlargement of tonsils causing restrictive breathing etc. I still have no idea how I'm going to work around this, but I will ask for drainiage and/or surgery. I have had select serological testing done which with the exception of a high eosinophil count, tested negative. the tests done were: ASO antibodies Anti-nuclear antibodies Mycoplasma Pneumonia (IgM only) Anti-NMDA receptor antibodies and a Lyme panel conducted at BCA labs in Germany. I know this isn't a full medical work up by any means. I was rejected any testing on the NHS after subsequent discussion of PANS, so all testing was privately funded in the several hundreds through Blue horizon blood testing services. It kinda hurts when your family are constantly telling you that you would definitely test positive if it was an infectious related cause and PANDAS... I'll probably never know what's causing inflammation of the sinuses but drainiage seems to be the most viable option at this point. So yes, I'm a very isolated, misunderstood outcast and now desperately trying to save my mental faculties - but I'm up against the Great wall of china on this. I have tried to email Dr Swedo for her clinical opinion, and the rest lies on my mums grudging acceptance to speak with Dr K. But the point, yes I definetly get those sinuses cleared, thanks Jan.
  4. Hi Jan, I'm 24 now, so a considerable amount of time has been lost. To be quite frank, I've exhausted all psychological services, riding on a very late AS diagnosis - only sought after during acute exacerbation. I can't speak highly for the rather blasé and flippant approach received from my local clinicians. Each session has felt more like a casual get together, only to ask how 'I've got on'. I'm never rude though, I always show respect, I just don't believe there really taking my symptoms seriously enough, but there's little they actually do see. I admit, perhaps they realise they can do little to help my situation, my symptoms have always followed an atypical and inconsistent course. For months on end I will be totally dysfunctional, unable to effectively care for myself etc., then gradually I will achieve functional recovery to the point of near full independence. my sinuses and head feel terrible, but what I find is that after every 'relapse' there is a continual progressive decline, so it's clear that ultimately my condition is deteriorating. This has been most pronounced since 16, but perhaps that is because of an increased level of expectation, responsibility and social standing etc. I was once very strong at maths to the point that it was rather etched into my identity. Now, I'm struggling housebound, alone and isolated. Having to reinvent and pick yourself up from nothing each time is very difficult, not to mention how embarrassing it is in the ignorant eyes of others. I just feel something went missing in others eyes along the way... It's the acuity and sudden severe onset of symtoms that really make my case stand out.
  5. Thank you so much for being so informative in sharing your knowledge, experience and wisdom. Of course, reclaiming those small pieces of my life will be a gradual process dependent upon regaining some cognitive control and finding symptomatic remission. These last few months have truly been the hardest, walking around in a total daze! Inattentive to every matter, and effectively unable to retrieve or store any information in my short term memory. I can't tell you how many times I've walked out the grocer leaving my wallet on the counter! 😅 Or even hold a conversation. Thanks for your suggestions regarding dietiery and supplementary aids - I am also very interested in the glutamate transmitter, as in conjunction with OCD I also experience chronic depersonalisation, which I believe has it's etiology related to an inbalance in glutamate receptor cell activation within specific brain regions (in this regard it would be interesting to know how DPD relates to OCD!) I'm only now just starting to regain my appetite, before this I was living on next to nothing, so I'll be sure to take your advise on board. Other than that I'm awaiting ENT for possible T&A and sinus drainage, and of course my hope in immunotherapy... Anyhow, thanks once again! you truly are an invaluable asset to the board
  6. Couldn't the 'cl' sound be a manifestation of a phonic tic that interrupts with normal speech patterns?
  7. It would be interesting to know though, if the speech disfluencies were a product of basal ganglia dysfunction or rather a manifestation of behavioural regression? I know some sources in the literature report a new onset of selective mutism, paucity of speech and/or stuttering. To be honest though, during severe exacerbations I find myself constantly tripping over my words, only in the last few days has my speech fully returned to its baseline fluidity.
  8. Firstly, thanks for replying. On reading the literature, your right, its absence doesn't appear to preclude diagnosis. It's just when you examine the studies conducted by the NIMH, the prevalence in the clinical population estimates up to 70% of cases include tics. I can definitely relate to the motoric hyperactivity as a defining feature during 'flair up' times, but again at such a desperate time with progressive cognitive deterioration along with many other troubling symptoms, its nice to know you really fit into a 'very reversible' pans/pandas box. I'm sure you can understand. The dream from here is really just to sit in outpatient setting, receive immunotherapy and just feel like the weight of the world has been lifted from my shoulders. I've gone so long with little support from family, it's taking a huge effort to convince them of the need to follow up with the process. life used to be so enjoyable, maths was great (grade A) I was succeeding and then OCD struck... Now I have no one, I've become very isolated, a target for ridicule by my peers and to put it very simply, very misunderstood... I really do appreciate what both of you have said, the level of psychosocial trauma I've experienced is off the scale. But intrinsically, I know now my last hope really lies in pursuing PANS/PANDAS...
  9. This sounds a lot like Onomatophobia (fear of of certain words or phonetic sounds). Like you said the word may have a specific connotation for you, which may be rooted from a previous trauma. The trauma itself, in relative terms, doesn't have to be severe, but only be reactive to an age appropriate response. It could be the case that it is long forgotten, but we learn through pair association (classical conditioning) and like you said every time you hear it, it triggers a conditioned response. I hope you overcome this... best of luck
  10. I think an empathy course is a fantastic idea! To further on your idea; the technological advancements of today with virtual and augmented reality offer the the very best chance at being able to simulate another's unfortunate reality. This should be of paramount importance to professionals in the education sector, who as teachers in positions of influence, have an unequivocal responsibity to cater for the unmet needs and unrealised potential of millions of lives. Another exciting prospect is that simulated experiences would truly help to breakdown the stigma and social marginalisation of said individuals the world. afterall, in relative terms, it's very hard to hate or descriminate anyone once you truly understand them. Once again, fantastic idea!
  11. I'm provided with a home, food, and clothing. I'm very fortunate of that and l know there are others in a far worse situation... but beyond that I'm entirely dysfunctional and soldering on in a half brain dead zombie state, when I'm capable of so much more... Life eyy... can be such a funny thing.
  12. Dear All, I don't really have much of a purpose writing this post other than to describe to you the devastating repercussions and consequences that life a side has thrown me whilst being 'locked in' to this illness. Here in the UK, I'm a struggling university student currently on medical leave - the responsibility, time, planning and organisation of placement and finance is a huge burden for all, let alone for someone severely incapacitated. My story follows a familiar relapse/ remitting course of illness for several years. For the best part of 8 months I've been walking around in hazy fog totally unable to organise my thoughts, my short term memory is shot and I've had much difficulty in general functioning full stop. The worst part of this illness is the ignorance and lack of support I've received from my own family, who have expected me to 'just picks things up'. It may appear to some from an outside perspective that I'm simply dealing with a clear case of munchausen, but pure isolation coupled with blasé style of wilful ignorance has kept me battering on to my parents for the help I feel I need. Time is precious and flies by very quickly, the new academic year is upon me, and I'm still entirely dysfunctional. I realise that yet again, I will have to postpone my return to everyday functional life and the chance to succeed in education. I've exhausted all available help from the NHS, and now my fate really does lie in the hands of Dr K and the financial resources of my parents - they simply have no due care for the symptoms I've displayed for many years, and are finding anyway possible to refute or brush off a claim of PANS/PANDAS. Usually, I can organise myself and everything I've done or achieved has been entirely self directed. I've had contact with a prominent neurologist in London, who after receiving Dr K's letter did acknowledge the possibility of a historical picture of pandas, but made it clear that any treatment protocols were restricted to use in children - he doesn't treat adults because of the 'lack of research'. My last hope is truly in Dr K, being totally friendless, having no girlfriend and my mind being on the rocks, I have no idea how I'm going to turn my life around for the 'umpteenth time'. He returns from vacation tomorrow, my parents have agreed to speak to him but are very reluctant to entertain the idea of going the extra mile despite all the suffering. What do I do? How am I going to turn this around and restore all previous function? I understand we are all strangers to each other, and that us guys are selectively few and far between in the everyday world. I just feel so lost, with no clear idea as to whether I will 'suddenly' get better this time. My ability to concentrate and organise myself is abysmal, my ability to speak fluently has just returned. And to be fair I'm no one should have to go through the terrifying or deal I have... I guess as the great man once said "The world is a dangerous place to live, not because of evil people, but because of the people who don't do anything about it..." Afterall, ignorance is always the true killer. Thank you guys for supporting me these last few weeks, it's kindly appreciated. I just wish the real world was the same, I long to return to my former self.
  13. Hi Jan, Thank you for your reply. I can't say tics are a defining feature of my presentation, but there's definitely motoric hyperactivity (restlessness). I'm glad this doesn't rule out the diagnosis though. I only wondered about the possibility of a 'staring tic' if that makes sense, and with a irrepressible urge as described by the wave like sensations I get in my head beforehand. It doesn't happen often, only in severe exacerbations. Your right, It could very well be a NES ( I don't think it's epileptic) but I just wondered if this kinda thing was a phenomena known in pans/pandas?
  14. E Emi, this sounds a lot like depersonalization; a subjective sense of feeling unreal or anomaly in self awareness. You say 'feel' and 'felt set up' but from what you've wrote you clearly show an objective grasp on reality, this in itself isn't indicative of delusional thinking. There's a big difference between being detached from reality and having a break from it. Depersonlisation (along with derealization) is classified as a dissociative disorder and often goes hand in hand with anxiety disorders (OCD) and possibly as a feature of a chronic course of PANDAS/PANS. Obviously, I don't know the full picture and am not trying to argue or subsitute for your Drs opinion, but from what you have wrote you clearly describe the essence of depersonalisation. I've heard PANS/PANDAS can cause symptoms of psychosis (including hallucinations), and your case looks very strong for PANS/PANDAS - it's still very reversible at 20. You should definitely try to pursue treatment for a likely cause. I hope you get better soon, I'm 4 years older, in a kind of similar position, so if I can try to get better I know you definitely can.
  15. Hey all, Just a quick question regarding the nature and scope of tic behaviours, and their necessity to making a diagnosis of PANS/PANDAS. With regards to possible movement disorder, over the years I've exhibited a few embarrassing behaviours (mostly self injurious) such as hand biting and clenching the muscles in the throat. I've heard that the distinction between stereotype behaviours and tics are that the former are more habit forming and suppressible, and the latter have the quality of a preminotory urge and are only temporarily suppressible. Another troubling episodic symptom I've experienced (and quite frightening) particularly in stressful times, is that I will feel this wavy sensation behind my eyes (in my head) which will result in an unfocused staring spell (trance) lasting several seconds. I am conscious whilst this occurs, although inattentive, with the exclusion of sight from immediate awareness and it's not suppressible. Could this constitute a tic by definition? Is this inclusive to PANS and has anyone else experienced similar? Apart from this I can't remember ever displaying conventional motor or phonic tics, I just wondered if they were absolutely necessary in diagnosis? Hopefully pursuing treatment soon
  16. Thanks for sharing your story MC2, it's much appreciated. I only wish there was a greater informed consensus regarding PANS, inflammation, and neuropsychiatric symptoms too! It would make life so much easier. Unfortunately, as of yet, I have no official recognition of PANS through the conventional health care system (NHS) here in the U.K., so I'm very limited in accessing recommended treatment options. I've had correspondence with Dr K, who has kindly accepted personal care and follow up - I'll have to travel. He recommends a course of Beta-lactam abx for 14 days, if there is no response then of course subsequent follow up with prednisone. But I fear you may be right about the abx; IVIG appears to be the only curative measure at this stage, especially when you factor in such a late age. I'm aware that this will be expensive, but I'm hoping that enough progress can be made in the coming months for my family to fully appreciate both the implications and necessity for treatment, as well as the all important response to abx/steroids. yes, I did and still do suffer from joint pains! It's an interesting point, but their mostly episodic. My sinuses are what trouble me the most, I've recently developed a primary cough headache as well. I'm really glad you've found success, best wishes and thank you so much for your support! I realise I'm still at the start of this journey and with a long standing course of relapsing/remitting symptoms and progressive cognitive deterioration, any positive response to the medicine would be a dream come true. All things considered, I can't help but think that my condition stems entirely from a dysfunctional immune system (very mild ASD as well), which makes IVIG all the more alluring!
  17. Thanks for sharing guys, I hope the treatment goes smoothly well with curative effect. I was supposedly a 'late talker' but the more I think of it, the more I'm starting believe that I was only exhibiting mutism! My condition follows a continuous relapse/remit pattern. Up until yesterday, for several months I've been very muted and showed a high degree of paucity and stuttering! What kind of baffles me is how I've kinda snapped halfway out of it, very strange. Cleo - I'm so glad you found success! Thanks for sharing. It won't win - Stay strong; I can't imagine what it feels like to see your own little ones struggle so much; it must be awful, but I honestly believe you will pull through. I'm 24 and only looking for treatment now! I'm sure your little one will make a full recovery, I'm counting on it! Very best wishes!
  18. Thanks so much for the advice. I've previously tested negative for Lyme using the BCA labs criteria, which I understand to be very thorough, so I'm not holding out much hope in pursuing that avenue. At this stage there is severe cognitive impairment, but the clinical profile and history most resemble PANS/PANDAS with regards to its characteristics - It also seems that my condition follows a relapse/remitting course. Interestingly - up until yesterday, for the past few months my speech has been muted, with features of marked paucity and stuttering. Usually, I'm very articulate and can freely express myself with ease - although I've always exhibited selective mutism in specific situations. I'm still lost in the woods with regards to treatment, as I'm waiting for my Dr to return from vacation. However, with a retrospective diagnosis of ADHD and very mild (AS) in fitting with the clinical characteristics of PANS and it's sudden 'acute and extreme exacerbations', I'm hoping that I positively respond to the immunotherapy with marked improvement/or even curative effect - it's a lot to ask for for I know! Yes my head does really feel clogged - I've now developed a cough headache as well. ENT is soon, but I haven't had much luck with them in the past. I'm now really preying that the diagnosis can be validated with positive response to either the beta-lactam abx or steroids. With such a fragmented healthcare system, pursuing treatment is incredibly difficult, my only hope now is the direct care of Dr K. Thanks so much again though.
  19. Thank you once Bob, that's very kind of you in light of the situation. Unfortunately, I don't have the familial support to truly rally the cause. I've tried so desperately hard to educate them, but they seem to be obsessed with physical markers more so than any concern for my set of symptoms - despite giving them plenty of information and the word of Dr K. They'd be much happier to write it out completely and continue to send me to psych - being reluctant to go the extra mile to confirm diagnosis. It's very frustrating when you find yourself talking to brick walls - that can drive you crazy! Obviously, being a student I rely heavily on them funding the necessary arrangements. At the very least they will talk to Dr K, it still doesn't help that the bloods continually test negative even if I was only able to test for the few available - not the whole breadth indicated. At the moment, I am very congested! so hopefully a visit to the ENT will do good. Even when I mention to them the neurology reports indicating 'chronic' sinusitis, they dispute it on the grounds that I'm not pain. I certainly don't want this to be place to 'moan' or complain about my situation, but it is bad. I wasn't diagnosed with anything up until 18 whilst actively seeking professional opinion, before that my behaviour was seen as 'just bad, being lazy or not wanting to anything for myself'. But before the mention of travel, they were very happy to accommodate the opinions and the need for antibiotics. So honestly, as hopeless, isolated and dysfunctional as I feel at this point in time, hopefully Dr K can convince them the need for follow up. Still, I would love to clear my sinuses and respond to the medication advised. I can't see much benefit from a system that has followed me with effect for several years now. If I do find myself traveling there for any reason I will give you let you know, it's always nice to meet family's and people who can share similar experiences. ASD, ADHD, OCD are my labels but they certainly can't tell you the story of my life in the way PANDAS can. Thanks once again. These next few months will probably be hard, but as for any and everyone on this board, all we can do is fight for our health and search for the answers that actually mean something.
  20. I guess when you live with these set of symptoms for so long not being recognised by close others and seeking timely intervention, it would rob anyone of their very identity (regression, personality changes), severe anxiety inevitably leading anyone into a woeful pit of isolation and victimisation in certain circumstances. At this stage it looks like I'm going to have to travel to Dr K to trial the antibiotics/steroids and IVIG. I plan to do this after the T&A, but being under the direct care of someone who can potentially get to the bottom of all this is most important. My only hope is that I truly do respond to the anti inflammatory/ immunosuppressive medication because I think on top of the ASD it would really tie the pieces together and explain the real thats kept me back all this years. Everything would fit together for the first time, I would know what I was dealing and for all the ignorance in this world I could leave it very much as PANS. Thank you so much again Bob your support is very much appreciated, hopefully the next few months will give me the answers I need and the ability to get back to college and on with life etc. warmest regards.
  21. Sorry, to make it clear I've already had a phone consultation with Dr K who made a provisional diagnosis and outlined both diagnostic and treatment reccomendations. Unfortunately, NHS didn't accept the recommendations of the private consult, so I had to both fund and 'cherry pick' the few private blood tests available, and email the results back to Dr K. They refused to prescribe the augmentin, although I was honest mentioned the consult and received a kind referral to ENT - this being one of treatment reccomendations. Unfortunately, notging showed up in the bloods. So he emailed me back to say that this wasn't such a surprise finding in my age group. I was also told that diagnosis was a two stage process that relied on 1) supplementary evidence of infection, followed by 2) response to abx - This being the crucial factor considering the clinical profile. At this moment, I'm unable to get hold of the augmentin, so I emailed agajn back and asked if I he could personally take over the care and follow through with the recommendations, to which he replied yes. This whole process has been inordinately difficult and very fragmented as the NHS generally don't accept the validity of PANDAS, and have already clamped down on the use of abx because of resistance etc. I'm definitely going to follow through with this process, as I've came this far already. It's just shame that the bloods have came back negative. Especially the mycoplasma; I did some reading a while back on Dr Garth Nicholson - another prestigious Dr - who linked ADHD and ASD's with mycoplasma and the gulf war. I'm a gulf war baby as well! Aha! I'm just preying that all this works out. My mum also has a history of autoimmunity, so it definitely runs in the family! My symptoms are reminiscent of PANDAS/PANS, so I hope that's the route of it all.
  22. Hi Bob, Thanks so much for your input. I understand you loud and clear; that is the confirmed situation. I do have an ENT appointment scheduled for early August. I will ask them for T&A, and to help clear the sinuses. Although, without context it's a difficult treatment consideration to receive, T&A guidelines in the UK usually advise against it - in the past it was more standard procedure and common practice. It may be a case of finding an 'old fashioned' Dr open to surgical intervention. Yes, I know I shouldn't expect miracles. My functioning really does go from '60-0' every time, so far I've managed to pick myself up, but I don't how long that can continue. The OCD, anxiety and behavioural regression with every breakdown really has left me a wreck with major peer relational difficulties. But again the sooner I respond to any proposed treatment, the sooner I can rule in or rule out another reason why life has become a mess for me these last several years. I will update and hope I'll be in a situation to advise others (through personal experience) in my age group when progress has be made. It maybe a case of 'biting the bullet' taking a risk and traveling in hopes that I respond. Thank you once again. It's much appreciated!
  23. Hi MomWithOCDSon, Thank you so much for your advise. That is definitely a forward step in the right direction. I'll try to schedule treatment with him, and arrange the necessary care. Obviously, factoring in response times to antibiotic and/or steroid treatment to aid in diagnosis and the pontential necessity for further follow up treatment along with travel and accommodation, makes the whole process inordinately complicated. But, if the means justify the ends, then it's a definitely a process worth pursuing. Thanks once again. Europe maybe more viable, but if any others have passed a similar situation or for the benefit of others in the same one, all opinions are valid.
  24. I also don't want to keep emailing Dr K as I don't want to sound like a total lunatic. But if diagnostic measures and treatment are being resisted here, then I'm totally stuck. What can I do? I certainly don't want to scare people, but I've heard of the unfortunate case of a man in his 30's who ended up institutionalised, despite matching the symptom profile and testing positive for strep! I'm very sorry, it just looks so bleak.
  25. Some of you may have noticed that I have been very active on these boards lately. It's not that I enjoy dramatising my situation, but it has become desperate to say the least. My psychiatrist has just turned me down the much needed co-amoxiclav (recommended by Dr K) required for diagnosis, and asked that I speak to my G.P. I feel that at my age I don't have much time. Being a resident of the UK, I am prepared to travel far to trial the medicine needed to substantiate diagnosis. My question is: is this possible? And is there a possible route I can pursue? I have a retrospective diagnosis of (mild) ASD, ADHD, and OCD. These patterns of behaviour have followed me since childhood but don't do much to describe the acuity of symptom onset and the subtle characteristics that would accompany the behaviour found in PANS/PANDAS. Ultimately, this has left me in a state of pure desolation. Any advise would be much appreciated, as I'm prepared to do whatever it is to seek what could potentially save my life! Thank you.
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