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 .

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

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,

--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. 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.

I learned many years ago (while dealing with my dad's brain tumor) that YOU have to be the one to advocate for your own health and well being.

I have a wonderful PCP (other than her not wanting to fill out my RFC or whatever it's called for ssdi) She treats what she can and then refers me to specialist when needed. She will also refer me to someone outside her practice (Emory) if I ask her to. She is very caring and knows all about me and my life and family. I've been with her through her 2 pregnancies and her nurse is also great. All I have to do is call and they are johnny on the spot

That being said.....my problem is with specialists.......since I only had 'regular' problems before this past year I only went to my PCP. Since then I've had a onocologist, neuro, a foot and ankle specialist (who I had to ask to do a skin biopsy but he agreed) and a recent visit to a orthopedist who said the bones in both feet are fine....the problem with my left foot may be progression of the SFN or tendonitis. He says go back to the neuro and let him treat you. Oh...and let's not forget the 2 pain specialist...one with a dirty office and the other I never saw...just his assistant. With an appoint to come back the next week for shots....really ? Never met the dr and I'm going to let him stick needles in my back or feet ? Nope....rethinking the pain mgmt. dr.

If I could still drive I would be using Emory in Atlanta. Emory bought our local clinic but it's not the same as going to Emory itself.

What a journey we are all on. Some successes and some failures but we keep chugging right along.

Have a good day everyone

Debi from Georgia

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