trying to get doctors to listen

[Annie62]

I've only posted on this forum a few times, though I have been reading it since its inception, so I am fairly familiar with who all of you are.  It's highly unlikely I even have MS, so I am kind of reluctant to post here.  I used to post on the general neuro forum a lot, but Quix has invited me here to try to figure out what my diagnosis might be and also for the support system (which I have very little of).  I have had undiagnosed neurologic and other symptoms for 17 years.  Up until last year my doctors didn't even believe that I was ill, and I have been through nothing short of a living hell with what they have put me through.  Then last August I was dxd with severe gastroparesis (my stomach takes forever to empty), which is from autonomic dysfunction (a neuro problem).  I went to Mayo and got worked up for MS (due to my other symptoms-past one-sided weakness (only minimal now), intermittent tingling and mouth droop, etc.) as well as dysautonomia.  The MS work-up was negative (MRI and LP).  All they found was that I have hypohidrosis of my left leg on QSART test (autonomic neuropathy)--I don't sweat normally, which I believe is residual from a past Horner's syndrome (left eyelid drooped, left pupil was constricted and I lost sweating function on left side of body that lasted two years).  

I left Mayo without a definitive diagnosis, but was told I had some kind of autoimmune autonomic neuropathy.  One neuro thought it was a limited form of a primary AAN--which doesn't explain any of my other syptoms) and the MS specialist thought it could be an autoimmune autonomic neuropathy that was part of some, as yet undiagnosed, autoimmune disease.  I agree with her because it makes the most sense).  After I got back to my hometown in FL I tried to make an appnt. with a new neurology practice (since two past neuros had dismissed my symptoms as psychosomatic).  Apparently because I made a comment on the phone to the secretary regarding how those two neuros thought my complaints were psychosomatic and another neuro I saw years ago refused to give me my records (they claimed they couldn't find them) documenting my Horner's, this new neurology practice has refused to take me as a patient and wouldn't tell me why when I asked them.  I returned to my PCP and he dumped me after 4 1/2 years as his patient.  He said I didn't "trust" him (which is BS).  I was extremely upset and incredulous that he did this.  I think he did it because he knows he didn't take my complaints seriously, I had confronted him with this right before going to Mayo, and his answer to me confirmed that he did not believe my symptoms were anything other than psychosomatic.  Then he found out that he was wrong after my Mayo trip.  I also think the neuro practice called him and told him what I said.  

So now I have a new PCP, but apparently he talked to my old PCP, and in my 2nd visit with the new doctor last week he said "I won't be your doctor, either" if you do that again (speak "ill," however truthfully, about another doctor).  Since when do doctors get to tell patients what they are allowed to say and since when are they allowed to terminate them based on their speaking the truth about another doctor's bad treatment of them??  I just got back from a rheumatology "consultation" today.  My appointment was at 10:45.  The doctor came in at 10:52 and I left at 11:12 (20 minutes is a level V visit??)  The whole appointment was like talking in circles.  He basically didn't acknowledge any of the positive test results so far--past elevated ANA (1:160) and elevated calcium (10.6) at Mayo (he said that was probably a "lab error" even though I told him it was elevated in the past, too).  He said my overwhelming fatigue was probably from "depression," which I told him it was NOT, and I never had a chance to talk to him about any of my other symptoms (hair falling out, ongoing low-grade fevers, etc.).  Then he asked me if I understood what he was saying (understood what?  That he was dismissing me too?!) and I said "Not really, but it's better if I just don't say anything."  He never examined me other than looking at my hands, said he didn't have my records and didn't ask me for any (I had Mayo's and the gastro's records in my purse but didn't bother to give them to him since he was already writing up the lab requisition form and standing up to signal the appnt. was over.  

I thought when I returned from Mayo I had finally, after all these years of struggling to get a diagnosis, at leat gotten over the wall that I have been trying to get over to make my doctors believe that there was actually an organic basis to my symptoms.  But for some bizarre reason these doctors are not acknowledging what was found at Mayo or any of my other symptoms for that matter.  I know I don't have a definitive diagnosis/cause for my symptoms (that is why I am going to them--to hopefully get one), but I do have signs on testing of autonomic dysfunction (abnormal gastric emptying scan and QSART test), an elevated ANA and an elevated calcium, all of which are being dismissed.  I don't know what to do anymore.  I'm sorry this is so long and I sound so angry, but I am so, so tired of being screwed by these doctors.  Their arrogance and inability to listen is just profound.  

[Annie62]

Yeah, I did read the post from Skarey.  "Dr. from Hell" was an appropriate title.  I am really curious as to why this guy did this.  I hope she finds out for her own sake and also posts the reason on this forum.  Skarey should humiliate him as he did her when he yelled at her in the waiting room in front of other patients.  There is nothing doctors fear more than having someone speak the truth about their unethical behavior.  

I also have a consult with a new neurologist in two weeks and I am really hoping and praying she is a good listener and actually looks at my records and spends more than 20 minutes talking to me (unlike the rheumatologist I just saw).  I am tired of wasting my money on doctors who don't know how to listen and have the same pat, easy, convenient (non)-answers because they are too lazy and disinterested to put any thought or effort into figuring out what is causing symptoms.  They make unintelligent and completely biased remarks about your symptoms based on what they THINK they know about you (but don't know), and there just isn't the time or opportunity during the appointment to challenge all their ignorant statements.  

I can tell you are very frustrated and upset, too.  Hopefully you are able to say what you want to say to the neurosurgeon and get a response to all your questions.  Maybe you should type up all your symptoms with a good description of them and take it with you and hand it to him if you are like me and get nervous at doctor's appointments.  Anyway, good luck and post back how your appointment goes.

[alchris]

Hi thanks.....  for your support.

I know its scary I would never have known low BP can cause a stroke as well unless it happened to my grandfather.

Will keep ya posted if anything happens.  But at this rate it seems never to go in my favor.  

Hope you and everyone finds all there answers.

By the way if you havent looked at the other posts look at the one from skarey regarding Dr. From Hell.  That doctor should have his practice taken from him to treat people like that.  

[Annie62]

I hope Dr. S. is able to help you decipher what you have.  I know there are other things that can resemble MS lesions on brain MRI and hopefully she will be able to tell you one way or another if it is MS or something else.  You really have a lot of lesions!  Hopefully among all the tests and her reading of your MRIs you will get the answer you need for your own peace of mind and in order to know whether you should start on the Copaxone.  I can understand your reluctance to start injecting with this drug if you don't know for sure that what you have is indeed MS, as well as your desire to get on treatment if you do have MS.  

I hope you and your sisters have a good time together at the beach in Jacksonville.  You might also want to visit St. Augustine if you are able.  It's about 25 miles or so south of Jacksonville.  I was going to stop there on the way home since I had never been there before, but I got an LP headache right before we left Mayo to come home and had to lie down in the car, so I never got there.  Anyway, good luck to you.

[Annie62]

Thanks for the information/explanation about the low blood pressure and strokes.  I had never heard of that, so now what you wrote about your concern regarding taking the bromocriptine with your low BP makes sense to me.  

I do hope your appointment with the neurosurgeon goes well.  I think it is a good idea that you are seeing one and I hope he/she is a good listener and has an open mind about what you are trying to describe to them.  Good luck to you and post back what you find out after your appointment.  I hope you get the answers and help you need to alleviate your symptoms.  

[faitho]

Thanks for the info on Dr. S at Mayo in Jacksonville.  I appreciate it very much and look forward to seeking her advice.  To reply to your questions about why I have to travel so far - I live in KY and it's about a 12 hour drive to Mayo in Rochester or Mayo in Jacksonville, so I chose the one with the beach, plus I liked Dr. S's background and felt she might be able to help me.  I could fly, but 2 of my 3 sisters have decided to travel with me so we will drive and spend a week on the beach together.  

I am an odd case (among thousands) in that I have a positive MRI (numerous white matter lesions - at least more than 20 or 30 - but none active) and my long time neuro has said I have MS and wants to treat me with copaxone.  However, I have seen 4 other MS specialists (UK, Cleveland & Vandy) who only say "maybe".  I am 48 now and had my first attack of vertigo 14 years ago, thinking it was an inner ear problem.  After the second attack 4 years later, I sought help from an ENT who referred me to my current neuro -- after he ordered and saw my MRI.  So I am hesitant to take the meds yet and it's been 10 years since my last (second) attack of this major incapacitating vertigo that left me slightly unbalanced (gait) (and eventual hearing loss of ~ 40% in both ears).  However, I am currently experiencing some vision problems (not ON) as well as other issues that I am hestitant to ingore.  My MRI is unchanged in 10 years, so, on my own, I'm seeking another opinion from a specialist at Mayo.  I have not even discussed this with my neuro.  I am fearful of taking medicine for a disease I'm not totally convinced I have, and I'm not in denial or anything like that.  IF I have MS, then I am all for taking the meds to slow progression, but when I have so many "maybes", it's not a simple, clear-cut decision in my view.

[alchris]

Hello again.....

I agree 100% about your descriptions on Doctors.  We seem to know more than they do, from this forum and our own research trying to solve our own problems.  They especially write you off when you come to the with all your films and paperwork and nothing shows.  I have been not feeling good with my symtomps for quite a few years.  In fact when it first started it seemed at the same time of a really bad sinus infection.  This might well have been what I had all along just no one saw or picked up anything in the MRI'S which I truly believe is the real problem. Bad radioligist, I think a doctor is as only as good as the interperting radiologist reports.

For the BP medicine, when I told the doctor about low blood pressure and taking the BP pills lowering my pressure to much it can be dangerous.  Someone can have a stroke from pressure when it becomes to low as well as too high.  My grandfather was put on BP medicine he suffered a stroke because his BP was so low, when he went to the ER we were told that he should not have even be put on the BP medicine because his pressure was always normal.  (Another doctor error)  We were told that people dont realize that strokes can happen also with very low pressure.  So I was afraid that would happen to me being I have very low pressure to begin with.  Sorry rambled a little on that.

For the side affects of the medicine when I went on the web they are definite side affects of the drug as well as what is stated in the literature I received with the drugs.  When I told her that she did shrug her shoulders and said yes they can be side affects, but still quoting her "in her medical opinion its migraines."  I ask then why have my headaches increased in severity since being on the drugs.  I dont know why I bother they look at you like you have seven heads.  

Just searching on this forum it seems many people either with cysts or adenomas complain of similar symptoms.  They all seem to say the same thing that their head is worse on the side of the tumor/cyst.  But they have said the same thing, their doctors tell them their headaches cant be coming from what they have.  Again, how do doctors no this, text book somewhere in their studies from a team of doctors that printed medical journals , who probably never had the problem.  It is odd though from doing research that many people complain of symptoms yet the doctors all over the U.S. fail to believe its their problem.  As I said a small cavity in a tooth can hurt, when will they start beleiving the patient knows themself better than anyone.

I wont ramble too much more, but in all the testing I had this was the first time someone ever picked up anything on my films.  It has gotten to the point when I went to a doctor I told them I never had an MRI , just so they can send me for one and always hoped something would be picked up.  It finally was but still no defintie answers.  I did make an appointment with a nuerosurgeon, I told my doctor yesterday and she told me I dont need a second opionion.  You would think she would have turned around and said by all means go for one.

Oh on my CT scan the month before showed free form fluid,  would you believe I was told that was normal.  Normal my a***** I dont think anyone realizes that is a major complaint.  Hoping in a few weeks the neurosurgeon has an answer.



take care and thanks for the ear....

[Annie62]

Hi alchris,

No, it's not just you.  I understand completely your frustration with doctors.  The way I see it there are three main problems with doctors:  One is their systemic arrogance and smugness.  They think they know more about what makes you tick than you yourself.  I have always found this highly presumptuous on their part.  The second thing is most of them are pretty busy and pressed for time and either don't or can't give you the time you need to address what is going on with you.  It's 10 minutes here, 10 minutes there, and no one tries to piece it all together.  Unless a test shows something early on in the diagnostic process they get tired of you pretty quickly.  The last thing I've come to believe is that although doctors know quite a lot (some more than others), they don't know *everything*--and they should just say that instead of handing out inaccurate answers.  An example would be the side effect (headaches) you cited that you said was in the drug literature from the bromocriptine that your neuro didn't know about.  Either she didn't know about this side effect (and should have said that she would look it up) or else she did know it was a side effect but considered it a rare one (I don't know if it is or not) and didn't think your worsening headaches were due to the drug.  In that case she should have just been honest with you and said, "Yes, it is a side effect but it's a very uncommon one and I don't think your worsening headaches are due to this drug."  Most doctors, at least the ones I have seen, don't bother to make the effort to explain stuff like this to a patient.  It's easier/convenient for them to just say something is black and white, isn't possible, can't be so, etc., and they really shouldn't do that.  They don't give the patient any credit for having any brains and being able to make those distinctions on their own after being given the info.    

Something similar happened at my rheumatology appnt. a couple days ago.  This new doctor I went to told me that gastroparesis (neurological stomach condition I have) was not seen with connective tissue diseases (like lupus, scleroderma, etc.).  Well, I know damn well he is incorrect about that, so he is either not being forthright with me or he is ignorant about gastroparesis, because almost every credible article I have read lists the connective tissue diseases as causes of GP--and not obscure ones, either.  I said to him, "Isn't gastroparesis seen with scleroderma?" and instead of answering my question he said in a real condescending voice, "You don't have the symptoms (or else signs) of scleroderma."  I told him that I never said or thought that I did have it!!  I was only giving him an example of a CTD that gastroparesis is seen with since he erroneously told me it wasn't seen with any of them!  

I also know what you mean about different doctors coming up with a different interpretation of the same thing.  I just had my new PCP tell me he wasn't that impressed that my gastroparesis was evidence of autonomic dysfuction or that it was a permanent condition (in spite of the fact that I have had the symptoms of it for 8 years post- a really bad GI bacterial infection in '99, but the neurologists at Mayo (including the dysautomia expert)  think that it is both evidence of autonomic neuropathy as well as a permanent condition.  I would venture to say that I not only have *read* more but actually *know* more about gastroparesis than my PCP does--and I really do believe that.  He might not be "impressed" but *I* am impressed when I am in screaming pain and doubled over with it (not often, but happens even on the meds).  

You said your neuro mentioned a BP medicine (I assume it lowers BP) that might help with your headaches and wouldn't be a problem with your pituitary adenoma.  I understand that you are worried the medicine might lower your BP too much since your BP might be considered a little on the low side, in which case you could become dizzy from it, but I'm not sure I understand what you are saying about fearing a stroke.  I think you only have to worry about a stroke if it raises your BP, not if it lowers it.  Maybe I am misunderstanding you, though.  My brain doesn't work well when it's tired.  

I don't know anything about pituitary adenomas, but even if they don't usually cause symptoms, maybe it is possible that yours IS causing symptoms.  I mean, you are having headaches and you said they are worse on the side that the tumor is on, and you had them before you found out you had the tumor.  I don't know what to tell you.  Maybe take your films to another neurologist (or neurosurgeon?) along with a write-up of your symptoms.  What tests have you had done on your ear, if anything?  Can't your neuro suggest some kind of test that could find out about the draining feeling in your head/ear, or don't you have that feeling all the time in order for testing to show it up?  

[alchris]

Hi oops I do remeber you know,  It is so saddening to see so many people left with no answers and just told its stress time and time again.  Well I have another appointment with neuro yesterday.  She put me on bromocriptine for over three weeks already which has increased my headaches.  Told her that she said cant be.  I took the piece of paper out showing the side afffects and guess what, one of them was an increase in headaches.  I have tried things in the past no help.  Especially wiht the fluid draining.  It seems no one takes me serious that I feel the fluid.  Anyway, she said it is not very hard to give you headache medicince as they all interfere with the pitutary gland and since I have  pittuary adenoma it makes it harder to find a compatible medicince.  But get this she said she knows one medicine that wont interefere would be a blood pressure medicine that helps with headaches.  I had to practically control myself with her, because if she was reading my chart everytime I have been to her my blood pressure is always 100/60 and lower.  She got very annoyed with me, but i told her my pressure is always to low, I could have a stroke on that medicine.  Sometimes I wonder who knows more the patient or the doctor.  Than she tells me its migraines causing my headaches not the adenoma.  I tell her I dont fit the criteria for migraines, and that other doctors stated it must be chronic dalily headaches because migraines was ruled out.  First which doctor is right they all say different things, plus how can they truly know if my headaches and what my symtoms are coming from is not the adenoma.  She said and adenoma about an inch causes no pain.  I asked her if she ever had a cavity or splinter in her finger and if it caused pain, she looked at me like I was crazy.  But I told her if a small cavity or small splinter can hurt a finger why cant this be causing my problems.  Its not an incidential finding I am going to the doctors because of how I feel, not just for the heck of it.  Came home called up my husband and cried away out of frustration.  Wouldnt you think it makes sense the tumor is on the right side of my head causing the leftward pushing of the pittuary.  I told her besides my headache there is the specific pain on the right side of my head.  Is it me or no one doctor listens and puts anything together.  Does it make sense to you if a small splinter can hurt why cant this be hurting me.  Just frustrated and felt like venting.  Her other suggestion which she is certified in go for ancupunture.  

[Annie62]

Hi IUMOM,

I agree that it is unfortunate but true that doctors listen better to men or if men are present.  They probably figure they can't get away with as much without being challenged on it.  I wonder if I had a husband by my side if the rheumy yesterday would have talked to me the way he did (like he was humoring a mental case).  I'm single and don't really have anyone to go to the doctor with me.  My mother has gone in the past but unfortunately she isn't much help.  In fact, my old PCP who dumped me a couple months ago is also her doctor, and she did go once with me to see him.

I return to the rheumatologist (whom I did not like) in two weeks to find out the lab results.  If they are normal I won't be returning to see him and even if something signifies I have a connective tissue disease (which I doubt), I would take my diagnosis and go to another rheumatologist.  As far as my new PCP, I will give him another chance and I also plan to call my brother and ask him to talk to him.  I am supposed to see a new neuro but they haven't called to schedule the appointment yet.  I am hoping it goes well with her.  Unfortunately she is in the same office as some a--hole neuro I saw in 2004, which makes me uncomfortable.  I'm hoping I don't see him in there.  

When did your friend see Dr. S at Mayo?  She still doesn't have a diagnosis either?

[Annie62]

Hi alchris,

I remember you from the neuro forum.  I talked to you a couple times probably five months ago.  I am sorry you are still having the problems with the headaches and ear pain.  What do your doctors think this draining feeling is inside your head?  You mentioned a tumor of your pituitary.  Do you have a prolactinoma?  They thought maybe my cousin had one of those because he also had high prolactin levels, but it turned out he had Addison's disease instead (adrenal glands).  If your pituitary gland is pushing to the left on films, don't the doctors think it could possibly be causing your headaches?  Maybe if you took your films to another neurologist at a teaching hospital you would have more luck.  

Yes, I had a thyroid work-up including the antibody two different times and it was negative.  For some reason my PCP is repeating it.  Cortisol levels were also normal.  But I have had a mildly elevated calcium level a couple times and one doctor at Mayo mentioned possible hyperparathyroidism.  (I think you can have hair loss with that, but I am not sure).  I just had blood work done which included a chemistry, so I will see if the calcium is elevated again or not.  My hair started falling out after I had a few infections right in a row about 4 years ago.  

I am sorry that still no one is taking you seriously, Alchris, and you are going through something similar.  It seems that even when something is found it doesn't mean anything to (at least some) doctors and they dismiss it.  Have you tried any medications for your headaches, even if you don't know what the cause is?  Also, do they see anything when they look in your ear that is affected by the pain and draining feeling?  

[Annie62]

Hi Faitho,

I wouldn't normally mention/acknowledge a physician's name online, but since I liked her I don't have a problem with it.  Yes, she is the neurologist that I saw at Mayo-Jacksonville.  I think she is the only MS specialist there, but not sure.  I will have to read some more of your posts to see what is going on with you, but I assume there is a concern for MS if you are seeing her.  I went up there twice to see her and have tests done.  She referred me to another doctor there who did an autonomic dysfunction work-up and she did the MRI and lumbar puncture (actually the nurse practitioner does this in case you are going to have one.  She seemed to know what she was doing, so hopefully if you are having one it will go smoothly too).  She was nice and thankfully listened to me.  I was extremely nervous the first time I saw her because I didn't know if she was going to dismiss my symptoms as all the other neuros had prior, but she told me before she even did any tests, based on what I was telling her about my symptoms and my gastric emptying scan results, that she believed I had a neurologic problem.  It was the first time any doctor even acknowledged that there was something  not right with my body!  

Basically my impression of her was that she was not at all arrogant or brusque/impatient like so many male doctors I have seen.  She seems more open-minded and appeared to acknowledge the limits of western medicine.  I based that impression on a comment she made.  I can't remember her words, but basically the gist of it was that western doctors/practitioners expect tests to show results and, when they don't, in spite of a patient's symptoms, they have difficulty acknowledging that something organic still could still be going on with the patient.  In other words, she was addressing the fact that I had been dismissed as psychosomatic by so many doctors for so long because the tests weren't showing anything (up to that point).  She said before she did the MRI that one didn't have to have an abnormal MRI in order to have MS (hence, she wanted me to have an LP since my MRIs were normal).

Well, I hope you like her and it goes well for you, that you are listened to and she figures out what is causing your symptoms, whatever it is.  I hope you don't have MS.  I'm curious, though, why are you traveling so far to see her, or did you just hear good things about her and decided to go there?  I had never been to Mayo before and didn't know what to expect (I live in So. Florida).  It really isn't that big of a complex and it is easy to park and find your way around once you have arrived.  I don't know about you, but I get anxious about stuff like that.  Getting back to the motel was more of a problem, unless you are staying right on the grounds at one of the hotels there (which is expensive and which I did not do).  How many days will you be there?  They will print up a schedule for you when you get there.  You might have a wait in between tests, so I would bring something to do/read in case your tests are spread out.  Downstairs there are comfortable chairs where you can go to find a place to sit/have some privacy.  That's what I did sometimes when there wasn't time to go back to the motel.    

  

[IUMOM]

Annie,

Don't give up looking for answers. Something is obviously wrong. It sad to say, but I have had the best luck at doctor's offices when I have my husband with me (they tend to be less dismissive). Would there be someone who could go to your appointments with you?

If you are able I would take the records from the May and find a new doctor. Go out of town if you have too. You do not have to take any records that you don't want to take. Many neuros do require a referral though, so I suppose that could cause a problem.
If you are nearby the Mayo I would continue to see someone there.

Good luck.

[IUMOM]

Faitho,

I know someone who has seen Dr. Shuster. I keep hoping she will visit this forum as she is dealing with some unknown illness like many others here. I think she thought Dr Shuster was very thorough. I'll see if I can't get more info for you.

[alchris]

I grealty sympthazie with all of you having so many symtomps and being left undiagnosed myself after all this time is upsetting and frustrating.  I too am told that it is stress, etc etc. etc.  I try and tell the doctors that after 30 somehting years of living I know what it feels like to be healthy and the difference with the way I feel know.  I too have results that dont add up and each report says something different.  The only thing I can say to the original poster did you ever try an endocrinolgist, especially with the hair loss going on, I see regualr Practioners and neuros on your list but not an endocrinoligist,  I would if you havent done so at least try and find one to see if they can rule anything in or out for your health conceerns.  I went to one and found I have high levels of prolcation signaling a small brain tumor.  My reports say that my pittuary gland is pushing to the left and  that that iit is not symetrical and that there is hypo ehnaching area along with punctatee areas of abnormal signals.    No one even after this takes me seriously and tells me it is nothing major.  Yet I sit here with headaches that never leave, pain in my ear and fluid that I feel draining in the inside of my head to my ears throughout the day which makes my headache all the worse.  I hope all of us will find our answers soon but I myself dont know where to turn anymore either.  

[faitho]

Sorry to hear about your difficulties in getting help.  Most of us can fully understand what you're going through.  

May I ask if you went to the Mayo Clinic in Jacksonville, Fl and if you saw Dr. Elizabeth Shuster there?  I have an appointment with her in September and was hoping she is good.  If so, please give me your opinion of her.  I'm travelling a long way (12 hours) to see her, and I've been trying to get a definite diagnosis for about 14 years so I'm sick of doctors.   Her bio says she is a specialist in MS, white matter disease and demylenating diseases.

Thanks.

[Annie62]

Hello T-Lynn,

Thank you for answering.  I've read your posts and do know that you have been dxd with MS and some of what you are dealing with and what you went through to get a diagnosis.  I hope you are doing relatively ok.  Regarding the possibility of my still having MS, it's highly unlikely in spite of some of my symptoms.  Also, I have symptoms that don't fit in with MS.  I did have the 3-tesla machine at Mayo and no lesions were found.  The LP was also normal.  I've never had evoked potentials.  The MS specialist there said she could not 100% rule out MS but neither could she give me a diagnosis at that time.  To me that means she thinks it's highly unlikely (but not impossible) that I have it.  She does seem to acknowledge that there might be a CNS cause (or involvement) of my symptoms.  She was more open-minded.

With regards to my records, I thought my new PCP would have sent them over to the rheumy, but I did take them with me just in case.  I didn't offer them to this guy because he was so dismissive and clearly not interested in what was going on with me.  I did tell him of the findings, though, at Mayo and tried to tell him of my other symptoms, but he cut me short.  There was no way he was going to take the time to look at my records.  He said, "Well, what's going on NOW?" (wasn't interested in my history).  My PCP put "fatigue" as the reason that I was referred, and immediately the rheumatologist zoned in on that, saying that depression causes fatigue (I think this was the plan between them).  That is NOT the kind of fatigue I have been having for years now.  I know what fatigue from depression feels like and it is completely different-more of a mental lethargy and lack of interest/desire to do anything, sleeping all the time, etc.  What I have now is an extremely tired body and fatigued muscles-lifting my arms, washing my hair, etc.  I told him I no longer had any significant problem with depression and that the only time I get "depressed" is due to something situational (for instance, after a doctor's appointment, where my anger and being discounted turns to helpless depression--I didn't tell him that though).  I do have a follow-up with him in two weeks and he did order blood work.  I am going to bring my test results with me again and I'm not going to put them in my purse this time, and hopefully I'll have the nerve to ask him to look at them.

I know doctors fear patients will put them on a blacklist and I know they also talking amongst themselves (mine are definitely doing that), but I really feel that they've put *me* on a blacklist.  I would actually leave this town if I had the money and felt well enough to make the move.  For now I am going to try to work with the new PCP, but if he continues to be an *** I'm not sure what I will do.  I did give him a typed-up timeline in my appointment last week and he made some comment about how he wasn't going to be able to tell me in a million years why "heat bothers me" and said "Maybe it's (my symptoms due to) lead poisoning, I don't know."  I didn't even say anything in response to that, it was so assinine and flippant.  He also said he wasn't "impressed" with my gastroparesis because he had a patient with diabetes who had moderate gastroparesis and her repeat scan was normal.  I am not his patient, mine is severe on scan, I don't have an endocrinological disease (like diabetes or hypothyrodism) that when treated improves the gastroparesis, and both the neurologists at Mayo, including the dysautonomia expert, as well as my gastroenterologist, believe it is a permanent condition due to autonomic neuropathy.  I also told him that I have been having Sx's of it for years post- a bacterial intestinal infection that I had in '99, so my Sx's chronic and not fleeting.  When I said I thought he was being dismissive he denied that (naturally), but it certainly felt that way to me.  He also said that alone wouldn't convince him that I had autonomic dysfunction, conveniently ignoring the abnormal QSART test at Mayo which showed I still don't sweat normally, so I pointed that out to him.  Well, this is long once again.  I have a lot of anger and I should probably just go to sleep or get drunk for a couple days until it diminishes (or  until the next doctor's visit :)

[T-lynn]

You definately have had your share of Drs. being dimissive.

In all honesties when you had you Rheumy appointment,you should of given the nurse a copy of the mayo records,this could of changed the out come of the appointment.Most Drs don't take the time to ask for records.They double or triple book each time slot.

Drs in the medical community do talk amongst themselves and if they feel a patient is putting them on a black list Drs do spread the word,sad but true.

Starting over with an out of town DR maybe in your best interest,you may have to side step the past GP's records and hope that a new GP will except the mayo's work-up.Or you can give the new GP a chance.I'd wait before you have your brother intervene.

Sit down,write out a time line and give it to your GP.

Annie,sometimes when test come back negative the DRs. get stumped,for insurance reasons and all they have to go by the test results that they are given,just because the test they have ran now are negative doesn't mean its not there.Diseases manifest themselves in there own way.You could very well have MS,micro lesions that don't appear on MRI's.

Get copies of the MRI's and the reports from the Mayo,see what they state.

As of now you know that you are dealing with a neuropathy and the gastroparesis,these are a start.plus the ANA being elevated.

Make copies of the Mayo reports send them to Rheumy's office.See what happens.

Hang in there and give the new GP time.I know the frustration when your sick and there's no answers.It took me 2 years and a 4th neuro to DX my MS.But he had all my medical records in front of him.

[Annie62]

Pennst8r,

Thank you for answering.  I did read below that you finally got your records after threatening legal action.  I'm really glad you got them.  Nobody should have to put up with this kind of shenanigans from doctors.  It just makes things even more difficult and causes added stress when you already don't feel well to begin with.  

You said that you told some of your doctors that you didn't feel they were listening to you and that your records confirmed that suspicion.  My records, too, confirmed my belief that the doctors who I *thought* weren't listening definitely *weren't* listening.  It's usually pretty obvious (although some of them are poker faces) by the questions they ask, the ones they don't ask, their tone of voice, etc., whether or not they believe you are actually ill.  The one I saw today talked to me as though I were both mentally ill AND mentally retarded (and here I just thought I was the one!).  I thought he was very manipulative with words (not responding to the questions I put to him, but responding to something I didn't say), frustrating the hell out of me.  I still can't get over the fact that he only saw me 20 minutes for a consultation.  I have never had a doctor do that before---but it's always something new.  It really was a waste of my money.  When he asked me if I understood what he was saying, I felt like saying, "Oh, yeah, I understood *very* well where you are coming from..."

I know exactly what you are saying about doctors misquoting what you tell them and also their omitting symptoms you told them about because those symptoms don't fit in with their idea of what is (or isn't) wrong with you.  I am always amazed at what is written in my notes.  One note from a neuro said I had bilateral ptsosis (I never told her this), another said I had been maintained in the past on "psychotic medication."  It was supposed to say psychotropic meds (meaning I took antidepressants in the past), but now it's in my permanent records that I was psychotic as well!  I'm pretty sure that was a transcriptionist mistake, but all the same...  At Mayo I discussed with one of the neuros my needing to run to the bathroom all the time after drinking something.  I have only lost control of my bladder maybe 6-8 times, but if I weren't home most of the time it would be more than a minor problem, and I have lost it numerous times in the shower (which I believe is from the heat).  He told me that sometimes people pee when they hear the sound of running water (which I already knew), and I told him that there was no way that this was the reason in my case.  I said, "Well, I water my plants with a hose outside and I have never peed then, and all he said was "Well, I'm sure your plants appreciate that."  Then in my records it says that I have no problem with urge incontinence whatsoever.  I  never told him any such thing, but it doesn't fit with what he believes I have, so he didn't acknowledge it.  

It sounds like at least your PCP is working well with you and is willing to refer you to a new neuro or eventually to the Cleveland Clinic if things continue to not go well locally.  I wish I had started with a PCP who put my well-being before being an apologist for his colleagues, but it just didn't work that way.  I thought he was going to be good after my first visit (which went well), but the 2nd visit everything changed.  That is when he told me he wouldn't be my doctor anymore if I talked about other doctors, and that immediately put up a wall between me and him.  I couldn't even tell him what I thought about what he had just said to me because I was afraid he would dump me right then and there.  I mean, it's not like I wanted to go on a "speaking tour" about what these doctors did to me, but I have a right to voice my anger and/or to mention to other doctors what went on with a prior doctor.  After all, it's part of my medical history.  

Yes, I could go to a nearby town, but even if I only brought my Mayo records I would still have to tell them all that was going on with me symptom-wise and the chronicity of it if I wanted them to actually try to figure it all out), and I don't see how I could do that w/o mentioning all the specialists I have seen in my hometown.  Also, I think they would still ask for my former PCP's records and want to get in touch with him.  After what happened today, I think I am going to ask my brother, who is a physician, to call my new PCP and talk to him, because I don't see any other way out of this.  I have not wanted to bother my brother and drag him into this due to his own significant health problems.  He did work me up for several things in the past and told me in the very beginning he thought I had an autoimmune disease, but because of all the negative test results and all the opinions of the doctors and neuros that my symptoms were psychosomatic, I honestly think he came to believe the same thing himself a few years ago--but I couldn't bring myself to ask him.  He probably figured that so many doctors just couldn't be wrong in their assessment of me.  When I got dxd with the gastroparesis last August I called him and he started to listen and address my symptoms again, and he knows about what Mayo found and my PCP terminating me.  Anyway, I'm glad you seem to have a PCP you trust, and if the current neuro doesn't start taking your symptoms seriously then I hope you do find another one or make a trip to the Cleveland Clinic.  With two sisters with MS, I would think that MS or at least some autoimmune disease would be a serious consideration in your case.    

[pennst8r]

I know exactly how you feel about doctors not listening to you. I have recently (by threat of legal action) finally gotten my records. I had told the specialists I had seen along the way so far (ENT, otoneurologist, "headache specialist" - referred there because otoneurologist not listening, and neuro) that I felt they weren't listening to me. When I finally got all my records together, I have in black and white that they were NOT. There are misquotes; complete omissions of symptoms that didn't fit into the Dx they were trying to pigeon hole me into; there are lab reports with abnormalities accompanied by letters to my PCP that say testing was normal. I told my PCP that I felt the specialists weren't listening. He said he feels this is a "no-brainer". He asked me to try a different neuro. If we still get nowhere, he says he will send me to Cleveland Clinic. Hopefully he will hold to his word.

Are you close to another town with a different set of doctors? If so, I would try going elsewhere and only bring your records from Mayo. Then they have no reason to contact your previous doctor. Also, do you have through work or elsewhere access to legal help - a well-written letter from an attorney might be enough to keep his/her mouth closed.

Even if this is not much help, please know that you are not alone in this fight. We are all pulling for you.

Penn