I've Seen Too Much About Us Being Hypochondriacs Lateyl And I Am So Frustrated

[iheartcats]

I research a lot between doctor appointments. You are lucky to have 10 minutes of face time if that much, so I bring in my notes, summaries, etc. This is especially important right now as I've moved across country and had to change providers across the board.

I am now getting the feeling (whether intentional or not) that I'm a bit of a hypochondriac. I know I am not. I guess I was fortunate enough to have gone to my prior doctors for years before Dysautonomia and while I did have an SVT/Ablation years ago, that was recorded and dealt with. Otherwise, I had the normal stuff with allergy issues and hives, but nothing too extreme. I wasn't in for every little thing or begging to be medicated. They did not treat me as a hypochondriac.

Coming INTO new doctors with a diagnosis...well, at least I have that diagnosis backing me up, but these doctors don't know I was pretty normal up until POTS. It's so involved, and I want to feel better, I spend a lot of time digging through articles and experiences online. I had one print out I was interested in (to avoid getting more unnecessary tests this certain one was suggested first) and my PCP was like "Where is that from - I don't even know if it's accurate" - well...I was asking about it because I wanted to know if it was worth it not because I'm a hypochondriac. Anyway, I'm being referred to a Rheumotologist now to see if they have more insight.

But my symptoms can change suddenly. I can lose symptoms and gain new ones, and I guess that might look like hypochondria. I'm not USED to it and I am getting so frustrated, but it seems a lot of us have dealt with it.

It feels better to get this out there. Is there any way I should approach my new doctors about this? That this wasn't always my normal?

[bjt22]

I understand. Really.

I've been the one who's avoided doctors her entire life. When I had my babies, I had zero interventions and went home four hours later. I had a homebirth. When questionable things were found, I found reasons to downplay them.

And then this hit. I was very, very lucky. My primary care doctor knew that something was up and referred me immediately. I was diagnosed very, very quickly.

However, I've read about all those who weren't as fortunate and who've had dreadful experiences. So, in the back of my mind, I'm really afraid of being perceived as a hypochondriac even though I haven't been treated as one. This has probably impacted my care as I'm loathe to bring up symptoms. I gloss over a **** of a lot. Just in the past few weeks, I've been seeking care for my sudden hearing loss. Still trying to work through the appropriate channels, but I have to admit, my confidence is shaken. As much as feeling as if I'm being viewed as a hypochondriac, I feel as if I'm being written off as someone who's beyond help due to the autonomic dysfunction. I have this horrible feeling that losing half of my hearing is just being taken as another really bad thing that happens to someone like me.

I wish I had words of wisdom. Fortunately, I have doctors who are most often likely to work with me and let me suggest treatment options. Yeah, every now and then I get frustrated at this...but maybe its the best we can do.

[erik]

I'm tempted to just ask that the doc give me the blood test to prove I am a hypochondriac.

When they say that there isn't one... I say, well I guess YOU have no basis for YOUR concern then either, right DOC?

Sorry, feeling like a smart aleck today... bit of repressed anger here.

This is very bad to do, but I have a private list of symptoms and a "public" or "doctor" list. I manage them separately for fear of dumping things on the doc. However, this is horrible to do because a doc needs the full picture to do their job. But it seems an inevitable compromise and I hope it doesn't bite me... like there is some clue sitting in an odd minor symptom. Oh well. Sorry, not much help... but I have sympathy in the frustration aspect at least.

[iheartcats]

Sometimes I have the same blood test come back differently every 6 months! I'm in no way in control over this at all so it just baffles the doctors even more.

I've had a handful of wonderful doctors, and hope my new Rheumetologist is as kind and helpful as my old one. I go into these things positive, but we'll see.

I get frustrated and have a hard time describing some of my major symptoms (I too ignore minor things more than I should). Fatigue isn't tiredness like sleeping, it's more like walking through molasses. And my muscle/joint pain. It moves around. It's annoying and new. And it just hurts. Randomly. Hard to pin-point and doctors like things to be pin-pointed.

[Tachy Phlegming]

I'm tempted to just ask that the doc give me the blood test to prove I am a hypochondriac.

I think that this is a very important test to request if there is a suspicion of hypochondria. I'll have to remember to ask for this if it should be necessary.

I don't remember from my reading but I think that if there are enough other odd and fluctuating blood abnormalities (as in Cat Lady's case and as a lot of people on here experience), the printout they send should be negative for hypochondria.

I don't understand why high/low blood pressure and high/low pulse aren't also used for the evaluation. They always take those but then, it's like they're ignored (I think the underlying theory is that abnormal vital signs only indicate diseases which have an indirect effect on vital signs, not a disease which directly influences them-- if that makes any sense).

In fact though, regardless of their import in showing the seriousness only of diseases which don't directly influence vital signs, vitals are really an excellent diagnostic tool to rule out hypochondria.

[erik]

I did test positive for IgMDBS antibodies

"Immunoglobulin Medical Doctor Bologna Syndrome" antibodies that is. Mine are off the charts sometimes. Perhaps it's genetic or perhaps caused by some environmental exposure. I think there is a correlation with POTS, though... research will bear me out on this one day.

[Maxine]

Hi-----

They say doctors make some of the biggest hypochondriacs---------------LOL.

I guess when they accuse us of such an obtuse thing we have to dumb down to thier level, and tell them in a way they understand-----------LOL.

I suppose I'm a bit of a smarty pants today too.............

Doctors sometimes have a lot of insecurities, and they have to insult thier patients who won't sit there and stroke thier EGOs.

I don't take anything printed from the internet because they will dismiss this more times then not. I take test results, and other evidence of a diagnosis, backed up by a doctor specifically specializing in whatever the diagnosis is.

Once I went to a doctor with a six months log of very low BPs--------the lowest being 68/39 and he snubbed his nose at it. I'm thinking he was thinking I was a bit of a drama queen........ You can even show them evidence from other doctors with very good credentials, and those docs must be "dramatic" too, because the evidence is blown off too. If you have an idiot for a doctor, chances are his opinion of you will never change. Unfortunately, there's a lot of those out there-------

Try to find a doc who will take your health concerns seriously, and if he doesn't, fire him and move on to the next. It's really, really hard because you sometimes get accused of searching for a doc who will tell you want you want to hear. I don't know anyone who likes to hear how sick they are.

Just be yourself, and let them know your largest concerns first, then move down to the least of your concerns. This way, if you have one of those 10 minute docs, you'll at least have the important concerns expressed to him/her.

Keep your head held high, and if her/she is rude---------------ask for the hypochondria test----lol.

I don't know how much sense I'm making, I'm so tired right now.

Maxine :0)

[futurehope]

How I Handle Doctor Visits:

I only show previous results of tests. Doctors prefer evidence.

I pick one or two symptoms I would like investigated and I explain why. Maybe I want to explain my severe fatigue, or maybe the symptom is new?

I mention symptoms that are more in keeping with the doctor's area of expertise, unless he is a primary care physician, of course.

I find that if too much is mentioned, the eyes of the doctor gloss over, unless the doctor is an expert in this condition and is interested.

Anyhow, the above way of handling things is not ideal, but I find it necessary in order to keep the doctor from fear (because he has no clue and is overwhelmed) and to keep the doctor from thinking I am a hypochondriac.

It also helps to explain the deterioration of my health. I mention how "I used to be".

I've been treated this way by my new primary care physician. I posted about it. But I straightened him out.

I'm sorry you had to encounter this "catch all" diagnosis of hypochondria. I'm sure you are searching for answers as we all are.

[ladyt]

hi...

i think most of has been there.. I read two book writen by a hypochodriacs doctor (yes, he treat people for that)... he whants people how are hypochondriacs to be taken serious.. he write like a doctor, and somthimes during my reading a feelt abitt frustrasjon against him.. And reading tha books a understand why we as a group fits the bill.. We have a very complex and fluxation symtom list... But i am not a hypochondriach, or something similar, and neither is the rest of u..

Docs ust have to understand somthimes hovs are sebras , not horses...

We need more sort of jonny docs, nobody puts pots in the corner...

[maggie]

Hey fellow forum members I have a solution to your hypochondriacs dx. While trying to get my dx for pots I was called neurotic by several doctors. I believe these two words mean the same. I see a great psychiatrist who was helping me before pots. Now when a doctor even begins to start this type of conversation this kind doctor told me he was the only one who had the credentials to give this type of dx and if that if this topic came up in a conversation I was to tell the other doctor to give him a call and he would take care of this type of problem for me. He says I have enough to deal with by having this condition no less having doctors giving medical dx that aren't even in their field. I just politely tell them to give my psychiatrist a call and he will be more then glad to discuss my medical condition with them, it stops these doctors right in their tracks. I hope this helps others here, it's has worked wonders for me. I might hear these words but the conversation quickley goes in a different direction when I have a professional backing me up! Sometimes you to have to beat these doctors at their own games, and that's exactly what I have done.

Maggie

[firewatcher]

Hey fellow forum members I have a solution to your hypochondriacs dx. While trying to get my dx for pots I was called neurotic by several doctors. I believe these two words mean the same. I see a great psychiatrist who was helping me before pots. Now when a doctor even begins to start this type of conversation this kind doctor told me he was the only one who had the credentials to give this type of dx and if that if this topic came up in a conversation I was to tell the other doctor to give him a call and he would take care of this type of problem for me. He says I have enough to deal with by having this condition no less having doctors giving medical dx that aren't even in their field. I just politely tell them to give my psychiatrist a call and he will be more then glad to discuss my medical condition with them, it stops these doctors right in their tracks. I hope this helps others here, it's has worked wonders for me. I might hear these words but the conservation quickley goes in a different direction when I have a professional backing me up! Sometimes you to have to beat these doctors at their own games, and that's exactly what I have done.

Maggie

I do EXACTLY the same thing!

[iheartcats]

I never thought about the psychiatrist. I'll have to check into my coverage for that.

I think my PCP is partly baffled because I have two distinct sets of symptoms. I don't want them, believe me, but I have them. If I woke up feeling well tomorrow, I'd be thrilled to only go to the doctor for an emergency and a physical every two years. Heck. I'd be thrilled with that!

It is stressful for us to have to go through this, an I'm not alone! I've known people with CFS and boy, they were treated pretty terribly until the last few years.

It felt good to vent.

[Tachy Phlegming]

I did test positive for IgMDBS antibodies.

Perhaps it's genetic or perhaps caused by some environmental exposure. I think there is a correlation with POTS, though

With POTS, when you have low IgMDBS antibodies and high environmental exposure, you get extremely sick. The reason this happens is that your body is not taking any compensatory measures to keep your pulse down (keeping in mind that pulse is often too high in POTS patients), your core temperature low, and your blood pressure sufficiently high.

When your titers are higher, you are more resistant to MDBS. Your body is taking active measures to protect against the pathogen.

(Here's an article showing how high antibody titers afford protection with another disease:

http://www.ncbi.nlm.nih.gov/pubmed/16474069 ).

[janiedelite]

I agree with Maggie and Future Hope (although the rest of you had some pretty great suggestions ). I was regularly seeing a therapist last year when I got really sick with POTS and was referred to my first specialist. After hearing my odd symptoms (I did bring test results with me that correlated with those symptoms), he suggested I was anxious and needed therapy. I told him I saw a therapist weekly, and then he nodded and admitted he had nothing else to offer me. So we left.

Future Hope was quite right that most docs (especially specialists, it seems) only want to hear about one or two ailments that pertain directly to their specialty. But I'm sure any doc who is new to you and inexperienced with dysautonomia might feel overwhelmed. I think it's great to bring test results with you that directly back up your symptoms. I usually do bring my whole POTS book of medical records with me, but I only give them the most recent notes and/or test results that directly back up my symptoms so they don't get overwhelmed. Then, if they ask if you've seen a cardiologist, for example, you can pull out your big book of records and show your records from cardio or whatever applies.

It's really too bad that we, as patients, have to lower our expectations of the medical community. Thank goodness my PCP knew me prior to POTS, and has seen my deterioration with her own eyes. It would be very hard to explain how "normal" you were just a few years before. Can your husband go with you to validate your symptoms and help you explain things? I know how stressful these appointments are, even with a doc you trust. I often leave wishing I could explain myself better, but I try to bring someone with me who can help talk for me.

[juliegee]

Hey fellow forum members I have a solution to your hypochondriacs dx. While trying to get my dx for pots I was called neurotic by several doctors. I believe these two words mean the same. I see a great psychiatrist who was helping me before pots. Now when a doctor even begins to start this type of conversation this kind doctor told me he was the only one who had the credentials to give this type of dx and if that if this topic came up in a conversation I was to tell the other doctor to give him a call and he would take care of this type of problem for me. He says I have enough to deal with by having this condition no less having doctors giving medical dx that aren't even in their field. I just politely tell them to give my psychiatrist a call and he will be more then glad to discuss my medical condition with them, it stops these doctors right in their tracks. I hope this helps others here, it's has worked wonders for me. I might hear these words but the conversation quickley goes in a different direction when I have a professional backing me up! Sometimes you to have to beat these doctors at their own games, and that's exactly what I have done.

Maggie

I love your approach! My first initiation to the whole dysautonomia-thing was via my son. He was VERY sick for a long time before he was DXed. At 12 y/o he was shuffled from multiple visits to his pediatrician to specialists in Atlanta. His pediatric GI there was particularly vile. My son was so thin, I thought he would die. Mack was on the verge of needing a feeding tube. He was unable to eat & had many other awful symptoms- lightheadedness, fainting, etc. When this doc couldn't figure it out, he declared that my son had severe emotional problems causing his symptoms. I was pissed. I KNEW my son was sick. Unbeknownst to Mack's doc, I happen to be a MFT (Marriage & Family Therapist) I told him that was a mental health professional and I saw no sign of emotional or mental health issues. I then asked him what credentials he had that enabled him to give that DX. His face fell. I promptly had him send Mack's records to physicians at Johns Hopkins that I had found online. We had a long wait, but Mack was finally properly DXed. In he meantime, worried that I had overlooked things, I had Mack assessed by a psychologist. He deemed Mack emotionally healthy, but VERY frustrated that he couldn't find physicians to help him. You know I sent that report, plus all of the others from the Hopkins docs, to Dr-I-don't-have-the-answer-so-he-must-be psycho!

As a parent (rather than a patient), I worried about being accused of having Munchaussen's-by-proxy. It never happened to me, but I have met other parents online, whp have had to deal with this further indignity.

Stay strong, Cat Lady. You know who you are and were before all of this hit you. I try to keep a sense of humor, especially with my internist. I say things like, "You know it's never easy with me...." or "You'll never guess the latest?" It helps that I've had a history with him...I feel for you. Try to look at this as an opportunity to assemble a dream team of helpers. If you get a bad vibe, fire that one and move on to the next.

Hugs-

Julie

[juliegee]

I did test positive for IgMDBS antibodies.

Perhaps it's genetic or perhaps caused by some environmental exposure. I think there is a correlation with POTS, though

With POTS, when you have low IgMDBS antibodies and high environmental exposure, you get extremely sick. The reason this happens is that your body is not taking any compensatory measures to keep your pulse down (keeping in mind that pulse is often too high in POTS patients), your core temperature low, and your blood pressure sufficiently high.

When your titers are higher, you are more resistant to MDBS. Your body is taking active measures to protect against the pathogen.

(Here's an article showing how high antibody titers afford protection with another disease:

http://www.ncbi.nlm.nih.gov/pubmed/16474069 ).

I want some of your meds

[erik]

It might be auto-immune too. Sometimes I end up attacking myself over my own Bologna Syndrome! I figure an overactive spleen might be implicated too... when there is an ooze of black-bile here and there

Tachy, many thanks. I will print your article and present it to my doc next visit (wearing my House T-shirt and dropping a few references to the latest Mystery Diagnosis episode

[Tachy Phlegming]

With IBS, there are no real diagnostic criteria. It's thought to be nosocomial, both acquired and diagnosed on trips to the gastroenterologist where it spreads like wildfire -- so probably not some kind of autoimmune condition.

Often what you think is IBS comes from lack of treatment of an underlying condition: MDBS plays a big role in its development. So get rid of that MDBS and you will have few -- if any -- symptoms of IBS.

http://en.wikipedia.org/wiki/Nosocomial_infection