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Hi there, I am a 27 yr. old female who was just diagnosed by Dr. T with late-onset PANS. I wanted to talk a little bit about my history, problems I am facing now, and some of my lab work. I started having problems at age 7 with extreme overactive bladder which is now diagnosed as "IC". At age 15 sudden sharp burning pain in shins which I still have. At 18 developed anorexia nervosa, along with it came chronic tiredness and bad insomnia. I was just diagnosed with depression and treated with MANY medications and eventually ECT, none of which were helpful. I got somewhat better with ANA but had bad BDD and developed very bad bulimia in 07 at which time I also developed movement disorder only with my arms. In 08 I had a sudden onset of severe SEVERE GAD and my heart was tachycardic 24/7/felt like I was running on adrenaline. Trying to finish 2 year degree but getting only 0-2 hrs of sleep in 24 hr period for 6 MONTHS. I could not stop heart rate and that is later diagnosed as dysautonomia: POTS (hyperadregenic). Where is gets bad is January of 09. I wake up with fatigue so severe I cannot leave my bed for an entire year. Still no diagnosis. I felt like I was dying and sleep wasn't restorative at all (aged 22?). In 2010, sudden onset of OCD which has only gotten progressively worse month after month with no relief from ssri's, benzos, atypical antipsyhotics, or anaphranil. In 2010 I am able to get out of bed but have horrible post exertional malaise (PEM) am diagnosed by 2 doctors with CFS (chronic fatigue syndrome) - see 2 well known CFS doctors who can't help me at all. Immunomodulators gave me violent reactions and Xyrem didn't help me sleep and messed with my bladder and anxiety. 2 months ago somebody got me in touch with Dr. T and was diagnosed with late onset PANS which perhaps started when I was a teenager. Labs: elevated Anti-DNase B (224) No evidence of lyme or co-infections. (I went through lyme treatment, abx for 8 months, no help whatsoever and got very bad c-diff) IgG4 low IgA2 low Basophils are absent Positive for Coxsackie A and B Mycoplasma pneu. (high titers 141) Current treatment: I was put on valtrex, first round did not help, so going for 2nd round. I take a lot of downers: klonopin, xanax, zyprexa, bystolic (beta blocker), and very low dose zoloft. Everything is in tiny doses b/c I have crazy sensitivity to meds. I also have very bizarre reaction to medications so he wants to do some kind of saliva genetic testing. Excessive daytime sleepiness horrible but stimulants crash me and make fatigue and sleepiness worse. I can't stop the ocd even though I've been in therapy for 5 years and tried many medication. It's magical thinking not germs. Obsessed with bladder and sleep. The fatigue is more correlated with CFS but as ya'll probably know, there's no treatment for it. Other than that, my dad just left us. He says I am malingering and is not willing to learn anything. I have 2 puppies that I love and adore. I do photography and have a nice flickr account going. And I was a great musician before getting sick, I can still play and write songs every so often. I am mostly stuck at home in bed with obsessive thoughts wizzing through my head 24/7. I would like to meet other adult patients also. I am grateful to find this forum and I also belong to a social media site specifically for young adults with neuro-immune illnesses - we have chats, video friday night chat,s we are starting hobby groups, and we have active forum if any interested please let me know. - Chris p.s. Has anybody found that they eventually got help with ocd b/c it's ruined my life? Step #1 - valtrex Step #2 - genetic testing (try and figure out severe sleep and med problems) Step #3 - IVIG .............would removing tonsils be good idea (I've had problems with them since I was a child, infected all the time) and antibiotics did not help and gave me bad c-diff
I am a 27 yr old female who was recently diagnosed with PANS. I also have the diagnoses of: M.E./CFS, IC, POTS, complex regional pain syndrome, GAD + treatment resistant depression, excessive daytime sleepiness + non-restorative sleep. The ocd came on suddenly in 2010 when I was around 23 or 24. It's always been magical thinking surrounding the issues with my bladder and sleep - which are both very extreme. I've been in therapy for 5 years and tried MANY medications. I am currently on: klonopin, xanax, zyprexa, bystolic, and zoloft. I have tried MAOI's, anaphranil, and other ssri's and atypical anti-psychotics. I CANNOT stop the thoughts. It is 24/7 and it keeps me from resting and sleeping - both of which I need as badly fatigued as I am. The medications make me even more fatigued and sedated. I wish to be free of this ocd but don't know what to do though I have a good neuro (he is my first neuro ever) and my psych. is more than willing to work with him. I have extreme sensitives to medication along with bizarre paradoxical reactions to them. I am also on valtrex right now for positive coxsackie A and B. Next step will be genetic testing and then hopefully IVIG. I don't know what else to do. My family (excluding my mother and brother) think I am lazy and malingering but all my life I was hard working and overachieving until I became completely bedridden in 2009. I mostly feel like my brain is rotting b/c of how fatigued I am and even though I am so sleepy, I cannot just lie down and fall asleep. OCD becomes its worst when I try to rest or sleep. I merely just wish to connect with other patients and learn as I haven't met any other CFS patients with these problems. It seems foreign to most of my online friends. Thanks, Chris