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Mafrum
11-15-2011, 12:24 AM
I really need help finding a psychologist or psychiatrist who specializes in vasculitis or Wegners in the Boston area. My relative needs help and refuses to see anyone who does not know about her condition. Has anyone seen someone in the Boston area who you could recommend?

I would greatly appreciate it.

annekat
11-15-2011, 02:44 AM
I would think it would be rare to find one of those who specializes or knows much about vasculitis or Wegs. But I would go for a psychiatrist, since they are medical doctors and would be capable of researching and comprehending what Wegs is all about, plus they'd be able to consult with Wegs or vasculitis specialists, who can be found listed on the Vasculitis Foundation website. There are threads and posts on this forum about that. I'm sure there are some very good psychiatrists in the Boston area but I'm on the west coast so can't help there. Just my two cents worth. Good luck.

Anne

annekat
11-15-2011, 02:59 AM
I see there is a vasculitis center at Boston University and specialists there who are listed on the VF site. Maybe they could recommend a psychiatrist suitable for a Wegs patient.

Anne

renidrag
11-15-2011, 11:29 AM
Depending on your wegs doctor and his affiliations, Boston Medical Center works with Boston University in the Rheumatology and Pulmonology Departments. Depending on your insurance one or the other will cover you. I see Dr. Monach as a Rheumatologist and he is affiliated with BU and the big guy, Dr. Merkle, I am sure you could get a referral or an appt.
Dale

Sangye
11-15-2011, 12:38 PM
You really don't need a psychiatrist who specializes in Wegs (good luck finding one anyway!). Look for one that specializes in chronic illness. They will understand how to work with the non-stop ups and downs, grieving, etc....

Unless she feels she needs medical intervention, it's generally easier to see a psychologist or counselor. I've been seeing a therapist since I was dx'ed and it's made a world of difference.

drz
11-15-2011, 01:31 PM
As noted above a medical psychologist or clinical psychologist who deals with chronic illness will be best for counseling issues. If medicine is needed or likely then a psychiatrist is required. As Sangye said it might be easier to get an appointment with a psychologist who can then refer to a competent colleague for the meds if they appear needed.

Al
11-15-2011, 01:48 PM
As noted above a medical psychologist or clinical psychologist who deals with chronic illness will be best for counseling issues. If medicine is needed or likely then a psychiatrist is required. As Sangye said it might be easier to get an appointment with a psychologist who can then refer to a competent colleague for the meds if they appear needed.

...Or the other way around. The Wegs specialist is usually not so comfortable handling counseling issues, but is happy to recommend a trusted associate in that line of work. I think it depends on whether the physical issues or the emotional ones dominate. At the "triage" stage, when the inflammation is at its height, I think the latter approach is best. During remission, maybe see the counselor first (you probably have the meds you need anyway).

Al

me2
11-15-2011, 07:10 PM
I have the good fortune to be seeing a Jungian analyst who has a wife and a daughter who are physicians. Also, he has experience in helping people with autoimmune disorders and chronic illness. I think for me that is one of the biggest factors in him being able to help me- lots of experience with patients with chronic illness.

It doesn't have to be Wegener's, the issues we have are much the same as people with other disorders. It has been very helpful for me to get this counseling. I would look for someone with experience with chronic illness. The issues surrounding this have been the most challenging to me personally.
It is refreshing to have someone who knows better than to automatically say "You look fine" without also asking "How are you really?". ha

I was surprised to find that my insurance pays for this also. I would not be able to afford to go otherwise. I discovered by accident that my policy covered such treatment. It almost makes up for them denying me life saving treatment through their appeals process- not quite, but it does feel good to get something I want and feel is helpful.
I would also suggest that it be remembered that if you don't 'click' with a therapist you can just move on to another until you find one that fits. Finding a good connection is important and you don't have to settle for less.

Al
11-17-2011, 04:33 PM
I have the good fortune to be seeing a Jungian analyst who has a wife and a daughter who are physicians. Also, he has experience in helping people with autoimmune disorders and chronic illness. I think for me that is one of the biggest factors in him being able to help me- lots of experience with patients with chronic illness.

(A Jungian, in...Shelton? [!] My, my....)

me2
11-18-2011, 04:14 AM
(A Jungian, in...Shelton? [!] My, my....)

No, of course not, don't be silly. Shelton barely supports two gas stations and a restaurant. I have to drive to our state capitol - Olympia. About 45 minutes from my house. I make a day of it getting food from the co-op , Costco , any other of the perks of the 'big' city. If you are familiar with Jungian psychology it might impress you to know he trained in Zurich with Marie Louise Von-Franz. A student and brilliant contemporary of Jung's.
I have been a 'student' of Jung's work for over 20 years so it is quite a treat for me to have access to someone with real training.

annekat
11-18-2011, 05:35 AM
Hey, I'm from Olympia. Been lurking on the forum, posted a few times, and been meaning to post a more formal introduction. Nice to know of another Weggie so close by. I'd be interested to know who you use for your main Wegs doctor. You could PM me on that if you want. Your Jungian analyst sounds pretty impressive even for Olympia!

Anne

Al
11-18-2011, 05:46 AM
No, of course not, don't be silly. Shelton barely supports two gas stations and a restaurant. I have to drive to our state capitol - Olympia. About 45 minutes from my house. I make a day of it getting food from the co-op , Costco , any other of the perks of the 'big' city. If you are familiar with Jungian psychology it might impress you to know he trained in Zurich with Marie Louise Von-Franz. A student and brilliant contemporary of Jung's.
I have been a 'student' of Jung's work for over 20 years so it is quite a treat for me to have access to someone with real training.

(For those unfamiliar with the geography being discussed, Olympia is not all that large, as cities go, but it is the state capitol, so one can easily picture the place teeming with candidates for advanced analysis. Just to tie this part of the thread to the disease most of us have, I might recommend Jung's Answer to Job.)

Dirty Don
11-18-2011, 06:28 AM
Seriously? Answer to Job? Seems we Weggies have enough problems on top of any disputes over who gets to play god! Probably shouldn't say that here...is there an agnostics' thread??? LOL!

Al
11-18-2011, 08:01 AM
Hey, I'm from Olympia. Been lurking on the forum, posted a few times, and been meaning to post a more formal introduction. Nice to know of another Weggie so close by. I'd be interested to know who you use for your main Wegs doctor. You could PM me on that if you want. Your Jungian analyst sounds pretty impressive even for Olympia!

Good to meet you, Anne! So there are the three of us, so far, in the Puget Sound area--the Weggies of Western Washington. We could, maybe, have a website: www.www.wa or something...(VDUB is on the other side of the mountains.) Kirk's Weg docs are in Seattle, as are mine. So whom do you "study" with?

Al

Al
11-18-2011, 08:08 AM
Seriously? Answer to Job? Seems we Weggies have enough problems on top of any disputes over who gets to play god! Probably shouldn't say that here...is there an agnostics' thread??? LOL!

Dunno, Don, how theological this would need to be. The question, relevant to the thread, is, why do bad things happen to good people? I can think of many answers that don't rely on anything except quite natural processes. Jung's essay delves, naturally, into the things Jung normally delves into.

Al

annekat
11-18-2011, 09:03 AM
Good to meet you, Anne! So there are the three of us, so far, in the Puget Sound area--the Weggies of Western Washington. We could, maybe, have a website: www.www.wa or something...(VDUB is on the other side of the mountains.) Kirk's Weg docs are in Seattle, as are mine. So whom do you "study" with?

Al

Thanks, Al. I've recently been aware of you, have been aware of vdub since joining in April, and thought I'd seen one other post from Seattle, and I guess Kirk must be the one from Shelton. I am actually located in between Olympia and Shelton, off of US Hwy 101.

I'm being treated by a pulmonologist in Olympia and things are going pretty well. But I've wondered if long term I should have someone a little closer to the vasculitis/rheumatology side of things. There is probably no one suitable in Olympia. And there are apparently no Wegs specialists, according to the accepted criteria of this forum, in the state of Washington. I'm unable to go to Utah like vdub. So, I've been wondering if there's someone I could be seeing in Seattle if I ever felt the need. I saw online that there is a vasculitis clinic at UW. I'm 59 years old and aware that I'm having a much easier time of it than many others on the forum who are younger than I. But I also realize how sneaky Wegs is, and especially at my age, should have some backup plans in case things begin to turn for the worse. I'm now at the tricky stage of tapering pred from 15mg down to 12.5 and beyond, and it does take some time, doesn't it? I'm also on oral Cytoxan and Bactrim DS. Anyway, if someone could recommend a Seattle doctor, I'd be grateful, and a private message would be fine if you don't want to name names here.

Anne

annekat
11-18-2011, 11:10 AM
I need to correct myself re the above post: I believe what I saw online was that there is a rheumatology clinic at UW, not a vasculitis clinic per se, and that some the physicians on staff listed some interest, experience, or research in vasculitis and other less common autoimmune diseases. I think I've made that mistake before. Wishful thinking, I'm sure.

Anne

Al
11-18-2011, 11:39 AM
I need to correct myself re the above post: I believe what I saw online was that there is a rheumatology clinic at UW, not a vasculitis clinic per se, and that some the physicians on staff listed some interest, experience, or research in vasculitis and other less common autoimmune diseases. I think I've made that mistake before. Wishful thinking, I'm sure.

Anne

Anne--I will send you a PM.

Al

Sangye
11-18-2011, 03:13 PM
Seriously? Answer to Job? Seems we Weggies have enough problems on top of any disputes over who gets to play god! Probably shouldn't say that here...is there an agnostics' thread??? LOL!
We keep discussions about religion off this forum. It's been a problem in the past and has no place here. I for one would hate to see us go down that road yet again.