How long to hear from Dr. Peterson's office?

[valentinelynx]

To those of you who have succeeded in getting an appointment with Dr. Peterson in Incline Village: After reading Corrine's posting of her experiences (http://forums.phoenix-cfs.org/content.php?11-Corrines-Visit-to-Dr-Peterson-Part-I), I applied to become a patient. The papers they sent me only say that it may be months before they decide whether to see you or not. I would like to know:

What has anybody's experience been that has gotten an appointment: how long before you first heard back from them after sending in your paperwork? And how long between your application and the actual appointment?

I'm trying to evaluate my chances of being seen by Dr. Peterson. If it's not going to happen, then I'll have to come up with a second choice. The last CFS expert I saw was Dr. Jay Goldstein, and it's been about 10 years since he retired. I am in relapse, and emerging from the state of "why bother with physicians- no one knows enough to help, so it's a waste of time and energy" back to the wanting answers mode. (Being a physician myself, maybe I'm even more aware of the medical world's flaws than some). Anyway, I want a thorough diagnostic workup (which Goldstein didn't do, although he did well with the treatment end of things) to see exactly what is going on in my body and brain. Money is an issue, no insurance, and no steady income, so I can't just go see a variety of Drs.

Thank you for your input.

 

[knackers323]

what is this bullshit of deciding whether to see someone or not? Isnt ones person health just as important as the next persons? and if everyone is paying in the same currency, then what the hell does it matter. apart from this being moraly wrong (in my eyes), isnt this ellegal? I though it is an offence to deny someone health care? especially if they are paying.

 

[valentinelynx]

what is this bullshit of deciding whether to see someone or not? Isnt ones person health just as important as the next persons? and if everyone is paying in the same currency, then what the hell does it matter. apart from this being moraly wrong (in my eyes), isnt this ellegal? I though it is an offence to deny someone health care? especially if they are paying.

Umm. I think the point is he wants to see people he can help? He can't see everyone. Even so, has a waiting list over a year long.

 

[knackers323]

yes I get that, but can he really make a fully informed decision on that without even meeting or speaking to a person? or god forbid trying something, even though it may be considered experimental? It just makes me angry how these doctors play god, dictate what they see as being worthwhile in trying to try to improve the quality of life of someone else, demand rediculous fees and then, in my expierience do a half arsed job anyway. I have tried to see a doc before with a similar philosophy, but he only deemed those under 25 as being worthwhile in trying to help. sorry for hijacking your thread. I hope you find that he agrees to try help you.

 

[heapsreal]

if i had a chance i would try and see dr lerner or maybe find a quack who does a good work up on herpes viruses like ebv, cmv, lymphocyte subsets and natural killer cell function. curing type treatments for chronic viral infections are going down the antiviral line or immune modulators like immunovir which also help nk cell function as well as cycloferon which can help strengthen the immune system to fight infections in general. And someone who treats sleep problems seriously, u need 3-4 sleep meds ( couple different benzo's and some sedating antidepressants)that u can rotate between to help avoid tolerance and get good sleep most nights.

Thats my 15cents worth,
good luck,

cheers!!!!

 

[taniaaust1]

yes I get that, but can he really make a fully informed decision on that without even meeting or speaking to a person? or god forbid trying something, even though it may be considered experimental? It just makes me angry how these doctors play god, dictate what they see as being worthwhile in trying to try to improve the quality of life of someone else, demand rediculous fees and then, in my expierience do a half arsed job anyway. I have tried to see a doc before with a similar philosophy, but he only deemed those under 25 as being worthwhile in trying to help. sorry for hijacking your thread. I hope you find that he agrees to try help you.

I'd be wary of such a doctor.. would wonder if he's trying to get young patients as they would be easier to brain wash (eg one who thought CFS was all in the head).

Some CFS specialists may be choosey as they are specialising in canadian consensus defination CFS (originally called ME) which is different to the CDC CFS. Hence yeah a patient who dont fit what they specialise in may be sent away.. which is kind of fair enough as they arent really their area then. (forms to help to distinguish if the patient fits the criteria may be sent out first).

I am in relapse, and emerging from the state of "why bother with physicians- no one knows enough to help, so it's a waste of time and energy" back to the wanting answers mode.

If you've been away from it all for a some time and come back.. you may be surprised at how much things have moved forward. I found it to be that way after being in remission for 2-3 yrs... and staying away from physicians more than a couple of years before that due to "no one knows enough to help, so it's a waste of energy". So many new discoveries about this illness were made in that time. (yeah they arent helping but that IS progress every new thing they learn)

I dont know if you've done it already.. but rule out POTS as being involved in your case and causing some of the symptoms. (you can do that yourself by monitoring your heart rate).

 

[calzy]

Maybe he simply wants to valdate that she has a true CFS dx. and some time to read the medical records.

If you have the $ to fly to Miami, Dr. Klimas's partner (trained by her) is seeing patients with a short waiting list and accepts Medicare. Her name is Dr. Rea.

 

[valentinelynx]

Please. If you can answer my question...

I am aware of Dr. Klimas, Dr. Lerner, etc.
I think it is perfectly reasonable of Dr. Peterson to screen for patients that he is mostly likely to be able to help. In fact, it is standard practice among high demand specialists.
If you have been to see him, please respond to my question.
Thank you.

 

[valentinelynx]

BTW, since it takes 4 yrs of college, 4 yrs of medical school and a minimum of 3 yrs of residency to practice as a physician (I don't include chiropractors), it would be hard to find a physician under 25! No it is not illegal to select what patients you see in your practice. It is only illegal to abandon patients by terminating them from your practice without providing options for future care. BTWBTW, I am a physician myself.

 

[knackers323]

Hard to find a Dr under 25. I dont understand, what does that have to do with anything?

Its not illegal? Well I think it should be. I cant think of any other place in society where this kind of exclusion would be deemed as anything other than descrimination. And we arnt talking about something mundane or unimportant here. Isnt one persons life, and money just as valuable as the next persons?

What will be your reaction if Dr Peterson says he wont see you?

 

[valentinelynx]

Sorry, misread what you said back there about who was deeming who to help who, under 25 or what, my eyes skip lines when reading

... as for this whole discussion about Dr. Peterson, I'm a bit amazed to hear such things as, "how these doctors play god, dictate what they see as being worthwhile in trying to try to improve the quality of life of someone else, demand rediculous fees and then, in my expierience do a half arsed job anyway..." said about Dr. Dan Peterson, of Incline Village, of Whittemore-Peterson... the guy who has devoted his career to advocating for people with CFS? At no little personal sacrifice, from what I hear. The CFS community is fortunate that he still practicing after 26 years of frustrating uphill battles, starting with that first visit of the CDC to Incline Village in 1986(?). Many doctors would have burned out long ago. That he still sees new patients as well is a sign of remarkable dedication.

If he can't fit me in, I'll probably see someone in Klimas' practice.

 

[knackers323]

I wasnt specifically talking about Dr Peterson so much, I know nothing about the man. I m just saying that this has been my experience with almost every Dr I have seen in the past 14 years and when you mentioned about him deciding whether to see you or not, it sounded to me like a continuation of this attitude. I guess I was trying to blow of steam. I personally have been treated badly by some very arrogant Drs and I know others have too. Then there is the overall treatment we have recieved from the medical profession. Like I said before this prob isnt the right place for my anger. Im apologise. I hope someone can answer your question.

 

[paddygirl]

I wasnt specifically talking about Dr Peterson so much, I know nothing about the man. I m just saying that this has been my experience with almost every Dr I have seen in the past 14 years and when you mentioned about him deciding whether to see you or not, it sounded to me like a continuation of this attitude. I guess I was trying to blow of steam. I personally have been treated badly by some very arrogant Drs and I know others have too. Then there is the overall treatment we have recieved from the medical profession. Like I said before this prob isnt the right place for my anger. Im apologise. I hope someone can answer your question.

Knackers353 - Please don't beat yourself up. I understand your anger. I find lately that I blow up at the oddest times. A very condescending born again Christian who wanted to convert me in London got the wrong end of my temper the other day. (Nothing against anyones religion but she was obnoxious and insulting) I think we are all on tenderhooks at the moment.

Very few of us have escaped ill treatment at the hands of doctors and specialists. My own experience is what I call the Ha Ha Bonk doctor. He is a Neurologist in Cork , Ireland. He laughed so hard when I told him I had FM I thought his head would fall off. (A favorite from my kids old joke book) He then said 'and whats that other thing called? ME? that doesn't exist either!'

I met Dr Peterson in London and he seemed exhausted and weary, it's been such an uphill climb for so many years. He recently withdrew from the WPI to concentrate on private practice, so there is no question about his commitment to patients, but he is only one man and gives a lot of time to each individual.

Paddy

 

[violins4]

Sorry I don't have an answer. I am curious though how you got ahold of someone to talk to there. I've been leaving messages and have never received a return call. How did you get the paperwork to apply?

Thanks!

 

[Victoria]

Very few of us have escaped ill treatment at the hands of doctors and specialists. My own experience is what I call the Ha Ha Bonk doctor. He is a Neurologist in Cork , Ireland. He laughed so hard when I told him I had FM I thought his head would fall off. (A favorite from my kids old joke book) He then said 'and whats that other thing called? ME? that doesn't exist either!'

Paddy,

I'm really sorry you had this reaction from a doctor. If I had been in your shoes, I imagine I would have asked him if he was being "deliberately obtuse" or "just plain rude". I would then have proceeded to strangle him & they would have had to call the authorities to cart me off in a straightjacket.

I can't abide this kind of behaviour, and certainly not from a trained medical "professional" who I am paying good money to consult. I have been ridiculed more than once & I cannot tell you how enraged I was each time (the worst time was not actually about my health, it was about my religious/spiritual beliefs).

(Oh, I probably would have refused to pay the bill after the consultation fee ).

 

[*GG*]

Paddy,

I'm really sorry you had this reaction from a doctor. If I had been in your shoes, I imagine I would have asked him if he was being "deliberately obtuse" or "just plain rude". I would then have proceeded to strangle him & they would have had to call the authorities to cart me off in a straightjacket.

I can't abide this kind of behaviour, and certainly not from a trained medical "professional" who I am paying good money to consult. I have been ridiculed more than once & I cannot tell you how enraged I was each time (the worst time was not actually about my health, it was about my religious/spiritual beliefs).

(Oh, I probably would have refused to pay the bill after the consultation fee ).

Wow, you guys have horrible experiencese with Drs. I am glad that I have never had interactions like that with doctors. My worst scenario was seeing a Neurologist for 2 years due to headaches and back/neck pain. Tried all kinds of meds, and he called it Myofascial Pain Syndrome, at least he considered Biotox for my headaches. He suggested a Rheumatologist
who diagnosed me with Fibromyalgia.


valentinelynx I looked at the co-cure site and it had who you want to see and 1 other dr for Nevada. How about the ACAM website? Have you considered LDN?

 

[Victoria]

ggingues, it was probably only 3 specialists that I have had a bad experience with, but they were so rude & insulting (in my mind), that I've actually remembered them (I have a terrible short term memory).

After one, I wrote a lengthy 3 page letter pointing out the errors of his ways & how I felt - I'd print it in a post if it wasn't so long.

I never posted it (of course) - after all, you never know when you might be forced to explain your OWN actions. But I kept that letter on my home "file" to this day.

I did give it to my GP to read - he was rather taken aback at the specialist's behaviour too.

Fortunately, I have had some very, very good experiences as well, so my faith in the medical profession is not completely dead.

 

[valentinelynx]

Sorry I don't have an answer. I am curious though how you got ahold of someone to talk to there. I've been leaving messages and have never received a return call. How did you get the paperwork to apply?

Thanks!

We didn't do anything special. My husband does most of the phone work for me. Anyway, he just called the office number there at Sierra Internal Medicine (775) 832-0989. He spoke with Trish and they sent me a packet with the application and a very little info on how the practice works. The application is basic medical history questions, a request for a brief summary of your experience with CFS. You need to send or have sent to them your medical records. Plus you need a referral from a primary care practitioner. I sent in the application at the beginning of June and my PCP sent a letter shortly after that. They say that a nurse will call after Peterson has reviewed the application to schedule an appointment or not.

The info sheet says this (among other things):
"There are few CFIDS experts in the United States. As a result, there are more patients needing to consult with Dr. Peterson than his schedule allows him to see. ... After receiving your medical history and records, your case will be reviewed by Dr. Peterson and our clinical staff. It may take several months for a decision as to whether Dr. Peterson will see you. The waiting list to see Dr. Peterson can be longer than one year."

Don't know why you had trouble getting through. My husband called again today to see if he could find out anything about how long we need to wait. He didn't get any useful information, but had no trouble getting someone on the phone.

Good luck!