How can i get information properly recorded?

[Katee]

As i outlined elsewhere (on the blog spot Katee and weight loss and hCG (http://www.hawkeshealth.net/community/showthread.php?t=6783&page=1)), i had a very disappointing interview with a new doc last week. The first session with her had looked very hopeful, the second one took a nosedive.

However, before going to see her i had said, this is the LAST doc i want to see. I said, "Whether she provides what i desire or not, i need to stick with her so that i will have a doc to record and report my situation."

I live in So Cal and we have a huge number of doctors here, even alternative doctors. I go to their websites and read about their philosophy and approach. The result is i feel overwhelmed with the choice (i've forgotten the precise psychological term for this) and spin my wheels in the middle of indecision for some time. Because i'm so overwhelmed, i tend to be ambivalent until i reach a point where i feel i have to decide and see someone. I have asked other people for recommendations, too. I have one person who swears by her wonderful nurse practitioner. (I would have to drive 2 hours round trip to see her when i'm in Orange County, or drive 5 hours round trip from home.) Another person swears by her "miracle blood doctor" and a psychic. (I would have to drive 3 hours round trip to see him from OC, or 6 hours round trip from home.) There are others, and i spin my wheels about these, too, not knowing which way to go.

In the past 4 years i've seen 2 naturopathic docs (one from a website, one from a recommendation), a concierge MD, an acupuncturist (whom i like and who did good work but cannot be primary care and would not be able to address all my issues), and this new doc who is a MD but advertises as "alternative." In between times, in emergent situations i have seen a couple of local MDs and have had to be seen in ER twice. Neither of the local docs are ones i would entrust for my health care.

That is the background. In general, i have been treating myself for infections, colds, coughs, etc. with the help of this website and the Doctor Yourself (http://www.doctoryourself.com/) website. I will continue this. I also work a few hours a week in a chiropractic office, so i do get regular adjustments. I see a physical therapist (Kim) regularly/monthly for craniosacral work that helps keep migraines in check.

But my question is this: I am on disability. Disability reviews my case periodically. It seems to me that i need a doc on board who can document my problems and limitations so that when the review comes up, i have history and documentation to back what i say. I do still see a psychologist (PhD) on a monthly basis (i've been working with him for close to 15 years). He does document my limitations as i give them to him. He will report, but as disability now lists my problem as CFIDS rather than depression, i'm not sure how much weight his report will carry. Neither of the other folks i see (chiropractor and PT) are documenting anything that will help me.

So, i see that i have 3 choices:

1. Continue looking for a doctor (there are a several more in the OC area) who are "alternative" docs, in hope that one of them will be adept at reporting and assisting me.

2. Continue with Dr. S (the newest).

3. Simply begin seeing a local doc in my area, knowing that they will not help me, will not have any idea how to treat me, but that they will be able to document my limitations.

Option number 1 does not really appeal to me. My husband and i have already spent a lot of out of pocket money and i'm not anxious to keep "doctor hopping." Some of these docs take Medicare, but many do not.

Option number 2 isn't much better. But Reesacat suggested that i do a lot of the documenting myself, and insist the doc put these records in the chart. I'm not sure Dr. S would do this or report based on my self-reports.

I have two other problems with options 1 and 2. One is that many of these folks (in my limited experience) have an answer: X. And the answer for every body is X. Whatever their personal hobby horse happens to be, it is X for everyone they see. And if X doesn't work for you? Well, then you didn't try hard enough or follow their protocol strictly enough or you are non-compliant. That is what will be recorded.

The other problem is that each of these "alternative" docs wants to be an adjunct. They state that they expect you to maintain a relationship with a "Primary Care Physician." This does not work for me! I really don't want one doc, much less two.

In retrospect, i am wondering if part of the attitude of Dr. S on Thursday is because i called her office a couple of weeks before that when i had a rather extreme allergic reaction to a food additive (sulfite). I was not asking to be seen, but simply asking if she had recommendations for alternative treatment for the symptoms of this allergic reaction. (Her response was, "No, i do not. Benadryl.")

So, i wonder if my best bet is not to simply see a local doc, who i know can do nothing for me. I can get a physical, he can bill Medicare. I can see him a couple of times a year, have him document my progress/lack of progress/limitations, and then when a review comes up the information is there in place. The other thing with a local doctor is that if i have an issue come up, i'm not having to drive hours to be seen to get a diagnosis. I do not have to fill their scripts, but at times i don't know which direction to head until i know the issue. I'm quite happy treating myself with supplements and vitamins, but not quite so comfortable with self-diagnosis.

This is a sign that i have obviously given up on finding anyone to help me. I was not looking for a magic bullet, but to find someone with knowledge who could point the path at least. I am actually quite fine with my current regime of chiropractic, PT, support from a trusted psychologist, Hawkes' Health, Doctor Yourself, and common sense. But this won't address the issue of continued disability when they want to review my case.

If this were a friendship issue (bouncing friends like i've been bouncing doctors) i would look for a pattern and wonder what i was doing wrong. But in the current climate of todays medical world, i can't solely blame myself for finding someone with whom i feel i can work.

It seems to me that any one of these is risky.

Does anyone else on disability have a suggestion? Should i simply find a doctor locally and do what i can to get my limitations on record?

Wow, this is really long.

[Reesacat]

I use a local nurse practitioner and document my problems myself.

[Islander]

I'll be no help because the last 3 docs I've seen have been MDs who also embraced CAM. The first and second moved on to hospital medicine, and there followed a round of temps until I grew tired of the lack of continuity and moved to a different practice — again, with an open-minded MD. I apologize once again for living in Shangri-La.

Katee, were I in your position, and given the rising price of gas, I'd go with a local too. I always keep hard copies of all test results. Is it possible to do phone interviews? I did this when planning to change clinics, and the first doc (whom I knew by reputation and thought we'd be a good match) was a non-starter. I asked her whether she could recommend an acupuncturist and her reply was, "None of my patients can afford acupuncture." End of conversation. I can't afford one either, but I've been trying to prioritize solutions to my back pain. I'll bet all those poor patients of hers have at least one TV and dish or cable.

Good luck on finding someone you can relate to!

[Aaltrude]

I can be of no help other than to echo what others here have already said.
I have been fortiunate to find in the area I live both a Naturopath who is very good and a GP who is also a Homeopath and is sympathetic to CAM. The GP supports me also seeing the Naturopath and openly admits the expertise and treatment I am getting from the Naturopath is outside of his field and is a big help to me.

[Reesacat]

Katee, if I could wave a magic wand I wish you could see someone who understands MCS.
I think that is more of a problem with you now than the CFIDS.

[bmc65]

Katee, picking docs that are several hours away does not seem like the best choice to me, but I get the dilemma of picking someone conventional who is going to prescribe a bunch of undesirable pharmaceuticals and then write you off as noncompliant when you don't want to take them. However, it seems you just need documentation that you actually have CFIDS and MCS. Does noncompliance with care effect your ability to continue receiving disability? Sorry I don't know the answer to this myself, but it has never come up before. I guess it's time for a google search.

[highlander]

Are there any DOs in your area that take Medicare? That would be my first choice. Second choice would be to go with the local doc. I'm sorry you're having this problem.

[Katee]

We are in OC - 2 hours from home - every week from Tue AM until Thur about 1 PM or so. So, there are many more choices in OC than locally, and it isn't too difficult for me to get to them - i'm not making a special trip.

Locally, in our small town, i think there are 8 docs, one a dermatologist, two are DOs (i've seen one), not a single female doc in town. The only nurse practitioner in town is male, also.

I'm going to have to give this some thought. Thanks for all the suggestions.

On a different topic, but not worth opening a new thread - i've been hurting in my R hip as if i had been given a serious injection (think tetanus) recently. No injury, no bruise. A tiny mark high on my hip, just as if i'd been injected, and the pain is deep in the muscle.

I have an absolute fear/intolerance of injections. Can count on one hand the number i've had as an adult. A couple of times when i had surgery (some years ago now) i had them give me boosters for MMR and tetanus while under anesthetic. No pre-op shot either, of course.

Do you think i might have dreamed this and the body memory has recurred? It isn't very important, really, but it is very painful.

[Reesacat]

Spider bite? Or insect bite of some kind?

[Pattypans]

Katee, I also hope you find a health care practitioner who can be a help to you in all the ways you need it, documentation included. At the risk of sounding Pollyanna-ish, you never know--the right one might be just around the corner, in the sense of the next one you try. Does it definitely need to be a woman?

About your hip: do you suppose it could be a spider bite, or some such?

[Reesacat]

Pattypans and I must have Mind-Melded LOL:)!!!Simulpost!

[mellowsong]

Katee, my first thought too was a spider bite. As to the doctor situation: I am in a similar situation. I am fighting for increased disability through the VA. Seeing outside docs, even "alternative" did not help me with this battle at all. I am now firmly on the medical treadmill going to the VA frequently.
The bad:
1. They prescribe idiotic stuff that I know is not going to help me and will harm me, such as extremely high doses of Prilosec and Tagamet. They think reflux may be causing the respiratory problems although ENT says there is no sign of reflux in my vocal cords/trachea. I told them I'd give it a month. Within a week I was feeling horrid. I stopped the meds. I hate being dishonest, but I order the refills. After the first month, they didn't stop the meds, they doubled the dose of each. Nope, no way, not gonna do it.
2. I've had to undergo testing I really didn't want.
3. Even the specialists admit they have no more ideas on how to help me.
4. My input is not welcomed nor is it listened to. They actually have gotten angry that I've gotten lab/test results prior to the visit and want to discuss it intelligently.

The good:
1. The same doctors are now seeing me regularly and seeing with their own eyes exactly how limited I am. Although the documentation isn't the greatest, they are starting to chart that I use a scooter for shortness of breath, that if I take a shower, I need to go to bed for several hours, that I don't leave the house except for medical appointments, stuff like that. Wandering around to outside doctors, there was no consistency with what they saw or charted.
2. Now that they are getting to know me, they no longer throw depression and the need to see mental health in my face every time I'm there. It took almost 4 years to get to that point but it is a relief I don't have to hear it anymore!
3. I have actually been referred to a Chronic Fatigue doc who is very knowledgeable although conventional. It's a fairly new clinic at the VA and he picks and chooses who he wants to see from the referrals. I really like him.
4. I got a referral to an acupuncturist. He is a conventional MD, a professor at the medical university and chief of the VA pain clinic. He also has a huge interest in CAM and just got his acupuncture certification last month. I wish I could get the acupuncture more than once a month but 2 out of 3 times, it has helped.

I really didn't mean to make this about me. My whole point is that if you pick one person, even if you don't like/agree with their philosophy, you will be much more likely to get the documentation you need. It took me a long time to come to the realization that it is a game you have to play. The LAST thing you need is to have non-compliant in your records. I take the prescriptions...if I feel there is merit and no harm, I'll try. If I react, I call immediately and tell them why I need to stop. If I think the drugs may harm me and offer no benefit, I will explain my reluctance to take something, using MCS as the reason and if they insist, I take the prescription but don't take the meds. I hate this, it feels wrong to me, but we are also between a rock and a hard place. We are the ones that have to live in our bodies. So, I would say pick a local or OC doc but stick to one doc so they can document.

[bmc65]

Mellow, I think that's some really useful FYI.

[Islander]

Mellow, please don't ever be reluctant to share your experiences or tell your stories. They are not only useful, they are sometimes warnings for the rest of us on how to conduct ourselves or what to avoid. Thank you for taking the time to recount your adventures with doctor-swap!

[Katee]

I'll second what the others said, Mellow. I so appreciate all that you share. It helps me to know the experience of others, and to know you better, too. I'm glad that the VA is finally working for you.

I also so agree with what Islander said elsewhere:
I'll add that Mellowsong knows more than a lot of doctors I've seen. A lot more.

I don't have to have a female doc. In the past, in fact, i preferred a male doctor. But from what i've seen of the local docs, up here it is a "good old boys, MD/DO is God" attitude. I also think it weird that in this day and age, every doctor up here (including all 4 chiropractors and all the dentists) are male. The exception is a female optometrist. So, i'm going to have to give this some thought. I particularly find it frustrating that there are so many alternative docs in OC, but to find one i can work with is quite expensive.

On the last issue, i didn't recognize the problem. I've had it before, but never over deep muscle tissue so that it began with such deep, deep pain. I think it is a mild form of shingles. (I have a friend who had shingles in her spinal column and it never erupted in the rash/blisters that are associated with this, so it took the docs a long time to diagnose.) It is pretty painful - the slightest touch is difficult, and wearing clothes/sitting is a constant pain, but it is not as extreme as what i've heard other people describe for shingles.

I guess it is fitting that since i had an unusual case of chicken pox as a child, i would have an unusual form of shingles as well. (NOT that i'm complaining, i know that typical shingles are much worse.) I do seem to get the unusual forms of things. I have one struggle tied to my cycles that i have never, ever ever heard of any other woman experiencing. It isn't so bad now (close to menopause), but it has caused a lot of pain thru the years. What i find most bizarre is that i've never known a single doctor to show any curiosity about it. They simply give me a bunch of pills to control the pain and when that doesn't work they get frustrated. Understanding the cause never hits their radar.

Anyway, thank y'all so much for the support and care. If i have any great breakthroughs, i'll post again.

[Reesacat]

Aww-feel better soon, Katee! I use homeopathy for shingles-it really helps.

[mellowsong]

Feel better Katee. I recently had what was very likely shingles on my breast. I just never got the rash but happened to be put on Valacyclovir for something else at the same time I got the symptoms.