Advice on getting help

[zeik]

Hi folks,
New to the group. Was first diagnosed with OCD at age 7 but treated only briefly. It’s been manageable most of my life. Things went completely crazy a few
months ago though. And I’ve been having trouble finding adequate help in the Boston area, which I usually joke is an excellent place to get sick with the bazillion med schools around. 

I started with some strange neuro symptoms, got a Neuropsych eval at Beth Israel recommending OCD treatment. Most of the hospitals refused to see me in their psych department (including MGH) as my primary care doctor is at a private clinic. I don’t feel like leaving my PCP who knows me well and is very available for urgent care.  MGH’s OCD clinic told me I was too sick for outpatient treatment and recommended intensive treatment at McLean which has a five month waitlist for the  intensive option with no support in the meantime. At this point, I feel like I am getting sicker due to the stress associated with finding treatment rather than just the OCD itself. 

I finally had to go to ER, was admitted, evaluated and set up with a psychiatrist at Cambridge Health Alliance along with a therapist. But the process is so slow and frustrating. It’s been a couple months now and we haven’t even started any therapy yet. And the appointments with the psychiatrist seem focused on how I’m tolerating the meds and there is not enough time to continue diagnostic work. I was readmitted to the hospital recently with strange symptoms which I think happened from over rapid discontinuation of one of my medications. The doctor who treated me there told me given my history of mixed neurologic and psychiatric symptoms which don’t neatly fit just OCD, I needed ongoing diagnostic evaluation but that the system wasn’t set up to do this and didn’t really offer a solution beyond trying to get long appointments. The psychiatrists at CAmbridge Health Alliance seem to focus mostly on medication management due to time constraints. It’s hard to get long appointments frequently to focus on dealing with diagnosing complex issues. 

At this point, I am angry, frustrated, depressed and don’t think I’m getting the care I need. I have been on disability leave from work for the past couple of months. And this is just destroying my life. I don’t even feel like me anymore. I am so angry and irritable with family, I snap and yell at everyone and I am then always ashamed about it. 

Can anyone share advice on how to get better help for my issues?

For reference, I have a history of migraine-like symptoms. 
In addition to contamination fears, I have recurring violent images of accidents happening to me or family in my head. 
The weird neuro stuff that has been happening is episodes of inability to speak, difficulty swallowing, jerking movements, getting startled very easily , getting scared very easily especially with certain sensory stimuli. Having strange urges like having to touch different textures, putting hands in my mouth, etc. 

I’ve had MRI and EEG which were both normal. 

I’ve also had increasing cognitive issues like lack of concentration sometimes bad enough i cant even read a comic book, word finding problems, mental fatigue with many activities even simple conversations or watching tv, getting overwhelmed in public due to the amount of sensory stimuli and decision making required. 
Current theory by neurologist is that OCD is exhausting my brain causing cognitive deficits in executive functioning. 

Anyone have any advice to share?

 

[Dr. Michael Jenike]

hi

if you have had a good neuro examination and everything is normal, and you have OCD, then i would think treatment for OCD would make the most sense.  have you had neuropsychological testing which the neurologist could order?  even though EEG and MRI are normal, this could pick up cognitive problems.  do you have a history of difficult to figure out neuro symptoms?  if this is all relatively recent, i would pursue the neuro aspect more aggressively.

you should ask your insurance provider how you should get the diagnostic workup if you feel it has not been done adequately.  the doctors may feel you have been tested enough and it is now time for OCD treatment.

for a list of OCD experts in this area, go to http://www.ocfoundation.org and look under treatment providers and put in your location.  there are a number of cognitive behavior therapist in this area who are in private practice.  you will have to check which ones are covered by your insurance.

some of the symptoms you mention could be due to medication.  most psychiatrists these days seem to focus mostly on medication so your observations fit with general practice now.  most of our patients have a psychiatrist to manage medication and a behavior therapist to do the cognitive behavior therapy.

i will check the waiting list at the OCD Institute at McLean but i have never known it to be 5 months.

i hope this is helpful.  let me know if i can help further.

all best wishes,

Michael Jenike, MD

[zeik]

Hi Dr. Jenike

Thank you very much for replying. I thought the system would email me with any posts and forgot to check for updates myself.

I have actually had Neuropsych testing back in May and that’s where the path to getting OCD treatment started after that found some cognitive impairment.

I believe you actually reviewed my file at MGH and recommended McLean.
And yup, I’m still on a waitlist since May. I’m told I’m very close to getting in so I’m hanging in for now.

But this whole business of finding treatment options has been extremely stressful so far and continues to be. Certainly not helping matters in general.

[Dr. Michael Jenike]

Good luck.  i hope things go well.  Michael Jenike, MD

[debkoch]

Hi I am looking for help for my son.    He is a senior in High School and began having outward OCD symptoms last year.  We live in Stroudsburg PA and are having trouble finding a therapist who is knowledgeable about exposure therapy.  He did  enroll in a program through Fordham University  via skype this past summer.  It was  a 5 day  program of twice daily therapy sessions.  WHile this program helped my son,  he still is in need of continued exposure therapy.  I am wondering if you have an advice towards finding a therapist near us, or if your program would have and opening in the summer?  His symptoms are mostly germ and dust fears, but also has irrational fears about contamination by harmless things or contamination of "unguarded objects".  He washes his hands excessively, throws away clothing and belongings he feels are contaminated. He continually asks me questions about objects being ok to touch even though he knows it's ok. For example he'll ask me if it's ok to touch a sandwich that was wrapped in aluminum foil. He has also become afraid of his own compulsions. For example he is afraid of hand sanitizer and at one point paper towels.  He was afraid of contracting poison ivy then became afraid of poison ivy lotion.
    He is distracted at school and his grades are down, failing several subjects. When I try to do exposures with him he often fights me in a way he would not or did not  with a therapist.
     Sorry this post is so long, but I had a "normal son"  a year ago and I am at my wits end. It is as if his brain has stopped working. I appreciate any advice!

[Dr. Michael Jenike]

hi

a good place to start would be to look under the treatment providers section at the International OC Foundation web site:   http://www.ocfoundation.org

 

they have a list of caregivers.  

 

take care,

 

Michael Jenike, MD

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