Possible PANDAS/PANS diagnosis

[Hitman3161]

Dear All,

I'm desperate for some guidance on my situation. I feel utterly lost and feel that I'm beginning to dwindle away as a solitary eccentric. However, I may finally have an answer nearly 4000 miles away.

To give you some background: I am, or was, a  24 year old mathematics student from the UK, with a working diagnosis of ASD, OCD and ADHD. I have a very much up and down history of academic attainment ranging from A's to U's during troubling periods. Anyhow, this cycle has been most pronounced for the last 6-7 years but may originate in childhood.

It all began in November of 09' at age 16, I was studying for A-Levels when all of a sudden and overnight I began experiencing extreme anxiety and unrelenting sexual intrusive thoughts (Pure-O), so severe it was impossible to channel my attention in any productive way. At about the same time I become housebound, started showing signs of behavioural regression and went off my food - I lost a lot of weight. At the time I was reluctant to talk about the thoughts, as I didn't believe they would be seen in the right context. Anyhow, fast forward a few years and with every "relapse" I become isolated, show marked personality changes and as result attract a lot of ridicule/bullying and ostracisation. I've never been able to find a relationship because of unrelenting untrue rumours and gossip surrounding my sexuality - unfortunately, I've been dumped a couple of times because of it. But more to the point I've never been able to explain the extreme shifts in my behaviour until perhaps now.

The symptoms range from mood swings, regression, brain fog, short term memory loss, insomnia and all I  can conclude is severe cognitive dysfunction - whether this is connected to ensuing depression, I don't know.

Anyway, out of desperation and with my current diagnoses, I searched for answer to tie all the pieces together. I had a consultation with Dr Kovacevic, who said that he believes my case to be certain for pans/pandas. 

Hence, he's provided me with diagnostic and treatment recommendations. Here's the thing, can pans/pandas explain such severe cognitive impairment? - because guys with everything I've been thorough I feel like I've lost my mind. 

And number 2 is there anyway around getting the blood tests done and receiving treatment here on the NHS, and at the grand old age of 24 is there any hope of recovery?

I'm sorry, I must sound personality disordered by now but I've gone a long way in the face of ignorance. I can hardly recognise the person I once was.

I just want my brain back, I feel like an invalid.

If anyone has some guidance, consolation or can enlighten me on the ins and outs of PANS, I'd be much obliged. 

 

What a life :/

 

Thanks for reading.

Edited June 20, 2017 by Hitman3161

[Hitman3161]

Sorry, just to add my life circumstances are down to years of bad experiences going on with no real support or conceivable explanation. The only physical evidence I have at this point are incidental findings on MRI showing chronic sinusitis, mucous retention cysts, and inflammatory fluid of the right petrous apex which is allegedly precipitated by previous middle ear infection. I need testing for mycoplasma and Anti-DNase B antibodies as well as a trial of Augmentin, has anyone one else achieved this on the NHS? I fear that because so much time has passed my situation is very bleak! Thanks again.

Edited June 20, 2017 by Hitman3161

[PIK]

I don't think age matters.  Please search for my old posts to see my story.  I ended up going crazy at 28.  Anafranil helped me through the OCD, which I no longer require.  I do get monthly penicillin shots.  I would just have them check an ASO titer.  Plus, can't you just buy antibiotics over the counter in the UK? 

[Hitman3161]

Hi Pik

Thank you for your reply. I definitely will read your story. Unfortunately, antibiotics aren't readily available over the counter here in the UK. I do have some doxycycline, I'm not sure if that's of any use. I think Dr K suggested  augmentin as a diagnostic measure. He thinks IVIG would be the only real help now. I was also recommended a T&A, but I have no idea how I'm going to convince my PCP for re-refferal back to ENT? It's a tough situation, all I want to do is go back to Uni but the situation just seems so impossible at the moment.

Edited June 20, 2017 by Hitman3161

[bobh]

That chronic sinusitis that you mentioned can definitely be a trigger - can you get your NHS involved in clearing that, especially as you have evidence of it.

[Hitman3161]

14 minutes ago, bobh said:

That chronic sinusitis that you mentioned can definitely be a trigger - can you get your NHS involved in clearing that, especially as you have evidence of it.

Hi Bob,

Thanks for your reply. I'm seeing my G.P on Friday, with the hope of re-referral back to ENT. As I'm here in the UK, I did receive an email from Dr Giovannoni who has kindly advised me to see Dr Jeremy Stern in London. Although, at this point I'm willing to give the doxycycline a try, anything to make some progress.