which doctor should be in charge of finding the diagnosis of underlying disease?
 

Please, help me all you wise members.
I am frustrated, and feel I have come to the end of "round one", if you ubderstand what I mean.
I have had so many tests and labs. and seen so many specialists.
I have gotten "objective" proof of polyneuropathy and autonomic neuropathy.
By "objective" as well as vasculitis. I mean , the doctors like to use the opposite of that word, namely" subjective" when they write regarding my symptoms, which off course are subjective, because we all know that the neuropathy both hurts and debilitate us, and we can only describe that by way of telling verbally to the doctor regarding our experiences.
My dilemma is:
I have 2 neurologists, one local that looks after the neurovascular part, as well as also acting as my local general neurologist. The other neuro is a professor with the university that I was referred to regarding my neuropathy. ( and it was pretty late in the game) He diagnosed both polyneuropath, long nerves included, sensory and motor. He also diagnosed re. small fiber neuropathy. I later had theese diagnosis confirmed by the Majo Clinic.
I have a Rheumothologist, that diagnosed the vasculitis, and is treating that, and she actually has ended up treating my neuropathy also. She says the terrible neuropathy nust be due to some autoimmune disease, but she can not find what.
So I am on high doses of Lyrica, and on Amitriptyline just to treat the symptoms. The Mayo Clinic did not do any thing for me. I drove 6 hour each way, and spent 3 nights in hotel, then came back in on week again just to see a rheumotologist, that was not available for me the first trip. (They should have had me see one) So the end of this story was that they just said" agree with present treatment, and continue with same" The neuro at Mayo just said: " at this time, we can only call it Ideopatic Neuropathy" so " we should treat the symptoms"
I have a primary Care physician that I have seen verry regularly. He has basically agreed with me in choosing specialists, and I have " an open acses insurance policy;
But I have a feeling this PCP really does not care one way or another. He just says: well I can not help you with that or, " Well. you have been tested more than any patient I know," or " you are seeing all theese specialists"

I had extensive testing done also with GI. There was a special GI, ( I had to travel some, he was outside my district) and he was knowlegable regarding auto immune disease ang Gastroenterology broblems. He diagnosed me with gastrophoresis, that again is a second test now to " proove" subjectivly that "I have something" Sounds imbarasing to write all this, but it is true

So now the real problem: WHO IS RESPONSIBLE TO FALLOW UP AND KEEP TESTING TO FIND THE END DIAGNOSIS ?
I think probably the answer would be THAT WOULD BE ME, THE PATIENT

I have kept trying and I have kept forcing and reading up on all I have asked for tests, I have gone from doctor to doctor, being insulted some times with the things they say. I have left some doctors and gone to others.

Now there is not any one in charge I just know that I have 3 important tests coming up They are admission to hospital for 3 days for videomonitored EEG and sleep study. Then I have a Spinal Tap, Then I go down to that specialty neuro to have another EMG and NCS done on left arm, because I find there is changes.
But I know that thees specialists, they only want to see you and diagnose you or do a spsefic test, not so that they want to sign up for ongoing investigation.
So my PCP doen in no way seem interested, it has been so that I only inform him re other test and outcome etc.
No one says: "HMMM let us see, what do we do next?
None of the doctors have done that, so I FEEL THAT I HAVE NO DOCTOR IN CHARGE .

Hi Synnove
 

Ideally, you want a PCP to coordinate the specialists. If yours does not seem interested, pack up all your records, and do some research. In fact someone on NT may be able to help you find a PCP in your area. It took me 6 years to get the group I have working with me. I have an auto immune problem among the issues.
I know this may not be something that you know, but did anyone check your T @ B lymphocytes? These are the cells that fight infection. Sometimes with auto immune diseases, these cells show a great in -balance, or you have them and they are confused as to where to go, and attack you as a foreign object.
This was one of the tests done to me, that really nailed my auto immune problems.
Get and keep a copy of all records and tests. When you go to a new PCP, present them, and see how much interest he or she takes in you. I did this with my physiatrist, and she asked to keep them, and then at the follow up appt. she really did start to address all the issues I had.
You need to feel absolutely confident that someone is actively engaged in trying to solve your problem This was the second post to where Mayo clinic didn't really get to the bottom of it. I went to Mayo in Mnn. and had four extensive days of tests. They did find out what was wrong.

The key is to have all your doctors work together as a unit. Each of my physicians gets a copy of the visits. I do this myself, and bring in the notes myself from the other doctors. When you have multipel issues going on, your don't want one in tune with you, and not the others.
Hope I have made a little sense here. I wish you all the best, and hope you find the help in a good PCP. ginnie:grouphug:

If you find a good integrative MD, they usually know more about causes of illness and good blood testing.

to Ginni
yes it was my post you read re. The Mayo Clinic.
But be that as it may be, I am over it now. But it is very difficult to handle all this my self. No, I have not had T and B lynphocytes checked. At least I do not think so. I have printed up the Liza Janes chart, and have started to fill them in with all test results. And I was planning to take them with me to next doctor, so they could see what other tests we need to do.

My best doctor is the Rheumotologist. She is Young, assistant professor at the university.of Miami. She has all the patience in the world, I can even E mail her, and she replies.
The doctor that is the socalled expert in neuropathy, does not seem to be interested to investigate any more than the initial bloodtests he did. He keeps insisting that my glucose tolerance test was borderline positive. But it was not, I even took the result to a endocrenologist and he said no. All the printed results were negative, none outside normal range. But this doctor insist that my 1 hour glucose was too high. But it was within expected normal
I think he just says this to have it said, that he did what he could, and found a cause of my neuropathy. Since I even saw him, I am so much worse. To the point now that my hands have tremort fom the parasthesia.
Ginni, I will tell you this. My rheumotologist put me on a steroid treatment, and I felt so much better, almost normal again. But after 6 weeks, I just have completed the treatment and it was tapered down as usual. Yes, I know all about Prednisone, and it's side effects. But I also know, and my doctor agreed, that due to a good response to the med, it means that there was an inflamation going on.
Yes, I must get another PCP. I sort of know the local doctors a little bit ( through my work) I have contacted one, she is caring, but I do not think that she is that knowlegable
I need to feel safe that I have a doctor that wants to take a little time. Don't you agree, I think the doctors would like to think of themself as having professional integrety, and also have interest in medicine and a little reserch.?
So, thank you for your reply, I will work on those things
I can not expect my Rheumy to take chage, and the specialty neuro seems to only look at it as a consultation, and not a continuation.
I have my local neuro, and he is very nice. He is the one that has seen me through a feew neuro things, I think he is trying his best. You see, the reason I stood by my PCP has been that he actually is very smart, and also is in chaerge of a whole unit at our hospital. I decided that I could keep him only as a physiacist consult, because he also has that tiltle.
Let's see. thanks

thank you Sally.
Yes, I will be on the look out for a good one. I thought I had one, but some how we just do not match.

Hi Synnove,

Ginnie made some very good points. In MY opinion, a good PCP takes care of everyday stuff and knows when you have conditions that warrant a specialist and directs you to them. The PCP also coordinates your care with any and ALL specialists you see. I, just as Ginnie, get copies of test results and bring them to my PCP just in case one of my specialists fail to notify him of their findings.

I go as far as to actually bring some specialists findings to another specialist in a different specialty as it could impact how they treat me for a condition within their specialty. For example: I mentioned to my endocrinologist that I was to have an injection by my pain specialist and that triggered a temporary change in meds by my endo. These two specialists are treating me for entirely different conditions yet there was a need for each to know about things outside of their specialty. My PCP does not always know immediately what is going on with my specialists so I try to keep ALL my docs informed.

Who is ultimately in charge? Sad to say but it IS YOU. Your PCP should be the coordinator but you need to help him with that at times.


It is frustrating but a patient must be their own advocate in many instances. Docs have too many patients and too little time to do everything

hopeless
thanks for your post.
Yes, I do absolutely agree. I will tell you. I actually have been living a healthy life, until the last 2 years all is happening.
I too, get all copies, and I do keep everybody informed.
I have to get a good PCP. I need someone knowlegabele, and also caring,

In a "perfect" world--
 

--a primary care physician would coordinate an individual's medical care, and s/he or his/her staff would make sure that all test results are collated and sent to the appropriate specialists--and s/he would make referrals to the specialists who would be most appropriate to provide opinion and insight on the individual's ongoing conditions.

Of course, it's far from a perfect world. :mad: Our medical systems are designed for the "easy" and "common" diagnosis, not the difficult. Far too many primary care physicians are overworked, and comparatively undercompensated, and don't have the time or inclination to do this. Even those that might have the inclination often find themselves running up to the limits of their knowledge for people like us. They are taught when hearing hoofbeats to think horses, not zebras; unfortunately, though neuropathy is common, when it comes to teasing out causes, a goodly number of us are not even zebras, but okapis.

This is even true of many specialists. Most endocrinologists, for example, can handle diabetics fairly well. But not many are that conversant with thyroid problems. And, if you're like me, and you have parathyroid issues . . .let's just say I'm glad I live in NYC, home to enough major research hospitals that there are some parathyroid experts out there (and some neuropathy experts)--people who actually conduct research in the field as well as have clinical practices. Of course, such people are usually found AT major research hospitals--"tertiary centers"--in urban areas. I am quite sympathetic to people who live in more rural areas, and the difficulties they have in finding doctors who can help them--it's part of the reason forums like these spring up and try to collect as much research info as they can (so people can take that in to doctors who are not as informed/involved).

Still, as has been mentioned, even if one is lucky enough to find a doctor willing to go the extra mile to investigate and coordinate, one is still ultimately responsible in these situations. Fortunately, with modern electronic information sources, one CAN become a reasonably good expert in one's condition, one can examine the possibilities using the tools available (such as this and the Liza Jane spreadsheets and the informational databases such as the Washington University Neuromuscular website--http://neuromuscular.wustl.edu/--), and one can use them to make suggestions to doctors about further avenues to explore. It may be more important in the end to have a doctor with whom one has a good rapport, who is willing to listen and to learn, than a doctor who is a world-class expert in one's condition. Sometimes, if you're in the right place and you get lucky, you get both in one package. But I'm the first to admit it's often a LONG search. :o

Being one's own advocate....
 

to Glrntaj
Thanks for your post.
I agree with you regarding bronging lists and articles labs etc to doctor
I still think it is hard to find a doctor that is willing to take charge and give the time
And it makes me think that: suppose you get really sick and condition worsen, and you no longer have the energy to " play" doctor's assistant.
I keep track of things, I have a file of every thing, even doctor' notes from each visit.
I have a file for each specialist, and I tell my family where thy are, just in case I should get so that I can not handle it. I have already had 2 dtrokes and 1 cerebral aneurysm, and now I am being investigated for seizures.
Well, so is life;
Glentaj, I will try to get a PCP that has had lots of experience with neuro stuff and neuropathy.

thanks again

Debi
Thanks, I am so glad you have a good PCP,
And I wish you the best. Hope you are fine. You need the strenght for the baby

I hardly see my PCP. I mostly let my rheumo have control of my care. I get IVIG Rx. in his office. I see him every 3 months. I also see my neuro off and on. I think he believes it is Sjogrens and there is nothing else he can do. He suggested I go to the NIH. He sent all my paperwork. I am waiting to hear back. There is nothing else he can do for me.

I have seen many doctors and I feel everything become more confused with each one. They seem to all have different opinions! For now I am sticking with my rheumo.

I don't disagree with anything said thus far, and wish you the best in finding the right PCP for you. I found a good one by careful vetting, and it took several years to assemble a good team—and they still don't talk to each other. :Doh:

The question of medical diagnosis is very complex, and worth reading/understanding. Boiled down and oversimplified, it's an educated guess, but that is very oversimplified. Given that 3 specialists may come up with 3 diagnoses, it pretty much has to lie with the patient to accept one or more, become the expert in their own condition(s), and take responsibility—drawing an analogy from baseball—as General Manager, while hiring a PCP as Manager of his/her team of specialists, etc.

Doc

For my understanding, is a PCP what would be called a GP in the UK, or the "home doc/family doc" over here?

My GP is certainly not an expert on PN, but I have a very very good rapport with her, which I find incredibly important. She listens and reacts to my suggestions. She tries/tried to send me to the best specialists she knows. She does trust that I'm not suffering from "internetitis" and reads up on what I suggest herself.

She also stated that for her (and her colleagues in the practice) rheumatologists seem the most often inclined to try different avenues of thinking, like you seem to have experienced also.

I think I'm saying that I am "in charge", with my GP as a sparring partner and consultant. That felt mighty uncomfortable at first, but I got used to it.

One thing I also do is to put all my blood test markers (the ones that are important for PN) in a single spreadsheet. It helps understanding their evolution (if any) and sometimes I find "anomalies" that aren't apparent when you concentrate on one single result, but come through when you note/see them in historical context.

Almost every time when I read how patients are treated I get angry in their place. So I know it's probably even worse having to read "well, you should take charge yourself". We are not trained for doing so! But it does seem that the more information you can gather yourself (to finally find that okapi indeed), and the more you can keep the overview, the better it is in the long term.

Pretty much, yes.

There are many (too many, IMO) things we are not trained for that we (probably?) should be. One of the problems with living in an advanced/technical age is that there is so much more to learn/know than there was 500/200/100, even 50 years ago, and not only will it continue to increase—the rate is accelerating. :eek:

On top of that, there is a worldwide shortage of doctors in every area of medicine. Change can be hard; I know it is for me—always has been. Hard to accept my body & mind aren't what they were (supposed to be) and hard to learn all the stuff I have to learn, when there isn't enough time to learn all the new stuff I want to/would rather learn.

Doc

That is a very good point. As much as it felt being thrown in into the deep end, I did manage to get on top of the disease (and the other factors that contribute to "health)".

We used to trust blindly in the medical profession. Now we seem to have to do our own homework. Or perhaps that was always the case?

I'm not complaining - there is even a part of me that appreciates the science - but as you say, there are 24 hours in a day. I'd rather have time to study music theory etc. But we now have resources (like this forum, books can be ordered and be available in the blink of an eye...)

Maybe kids should be prepared for this in school? How to take charge of your health?

Anyway, it seems we all pretty much agree that a PCP you trust, combined with actively researching yourself, is probably the best way forward. Specialists can be found and are obviously still very important, but if you don't live in an area where there are top people (like NY), you might be out of luck in that regard.

Some books have been around, but finding what was available took a modicum of library science knowledge (to know to look in Books in Print or its equivalent in other countries) or gain access to decent medical libraries. Doing our own homework wasn't nearly as practical (let alone possible) for most people.

Like other advancements, the numbers of books & periodicals have increased algebraically in the past 50 years, but the internet has put everything imaginable (and a few things unimaginable) at out fingertips. Now we have direct access to doctors, medical research, and more that we never had just 20 years ago, and its only going to keep growing.

Doc

Re: research
 

There is another great way to do research. If you are near a teaching hospital, You can get access to the medical library used for students. I read the magazines like JAMA. You look up the condition, and it tells you the lastest articles written on the subject that has been published, but not yet in Books.
These articles are the most recent on medical conditions. There are many journals like JAMA. ginnie:grouphug: