yesterday wasn't good

[DawnA]

When I first read this post I did not know how to reply!! It mad me angry at how you were treated. Well you have had a lot of replies and good advice. i have nothing to sayother than I am sorry your Dr treated you this way. He difinitely needs firing and hopefully in the long wrong you will get a better Dr.

Dawn

[briarrose]

I feel so much better today because I had all of you guys to talk with yesterday.

When things happen, like my doctor's appt Wednesday, It's so beneficial to have you guys here to put things back into perspective, to reassure me that what I'm thinking is correct because we start to doubt ourselves when we are told that are symptoms are in our head. I know better than to go down this path, but sometimes we allow ourselves to be strayed OR we stand firm in our beliefs just to piss the medical professional off. I fought the disbelieving medical system for 10 years suffering with severe joint pain, being told that it must be in my head because the rheumotologist couldn't help me, to finding Dr. Grubb who explained over activity of Neurotransmitters and putting me on Neurontin was one of biggest reliefs. Then you go back to your doctors to inform them so they can maybe help the next person with the same complaint, for them to just shake their head and change the subject because they don't want to hear that they may have been wrong or to learn something from a patient.

Nicole's Mom

It would be nice to have $5 bucks for everytime this kind of thing happens, we would probably be a lot closer to knowing what Dysautonomia really does to your entire body. This is just my personnel opinion but I think there is many things that aren't accounted for. Let me explain. There are roughly 60 documented symptoms that are acceptable to having POTS. But what about some of the strange symptoms that aren't? They can still be caused by dysfunction of the ANS but a guru doc hasn't accredited them yet so therefore they aren't necessarily accepted until proven?

Thank you for all of your kind words

It's funny but the way I operate now is not at all who I was 10-15 years ago. Back then I was very submissive because I was taught that the doctor is right and you never talk back. I have to admit that I was a much friendler, warmer person. I know that many of my posts sound harsh or short here but I've just been through many years of hades and have become very skeptical.

Jersey

I had fasted all night. Went to my cardiologist and had to stop and get something to eat because I was getting the shakes, I had 1/2 a ham and cheese sandwich and some water. I was 30-40 minutes early for my appt so I had to wait, then drive back across town for my blood draw so it was about 2 hours. Maybe that is the problem.

Radha

I know what you mean. It's hard to get acceptance because it's easier for others to say that we're a bunch of whiners. Especially since most of the POTS symptoms can't be proven with a blood test or radiology exam. Thank goodness my family believes me though, well they've been here to see me crawling on the floor or note my paleness.

Blackwolf

Your post was interesting. I wonder at night when I Suddenly hit the wall with exhaustion if it has something to do with blood sugar. I called my endocrinologist yesterday and he moved up my appointment to next Tuesday so hopefully we'll get to the bottom of this.

[briarrose]

Dawn

I will agree with you and everyone else and it's advice I've given before.

It's kind of a process, first that you've reached the end of the ropes with your doctor and what it was that finished off that relationship, accepting it, moving forward to where do I start looking for a doctor with knowledge of Dysautonomia.

I actually tried to call up around the medical school yesterday to find someone. The VA hospital right next to them has one of the largest autonomic labs in the country but they really don't use it for the general public. I just want someone that is already familiar with the multi-symptom package.

[corina]

Steph,

I'm sorry I'm late but I thought I already posted. Today I saw I didn't (my short time memory is bad, I'm sorry) but I just wanted to let you know that I'm very sorry you're treated this bad by your PD. I think you definately need another one. Maybe you can write him a letter in which you explain what's making you mad at him so that you can show him your anger without him being able to interrupt you.

This bad treatment is something I saw a lot on this forum. I think I really am blessed to have very caring doctors and wish I could share them with you!!!

Take care,

Corina

[DawnA]

Yes it is a process! The Dr/patient relationship is a process of building or as you are doing (so Am I) letting go. This is a long process with our appointments so spread out. To me it is a hard relationship because we have so little acsess and minimal control to this relationship. Yet we have or are expected to put so much trust into it. Letting go of something you wanted to trust and had hope that it was goodis so hard. Ltting go is a hard process when so much has been invested in this relationship. SOrry, sometimes my wording is a little odd, my brain sometimes has a hard time getting my thoughts out.

The thought of starting this process over is sooo scarey. The fear of the past repeating itself. But that won't happen, the past experiances are learning processes which will prevent this hopefully. I used to think of myself as a patient person. I do not think I can be very paotient anymore. I wish you the best in finding a new Dr. I really feel for you. I feel very blessed to have a great PCP who has been very supportive with me and my decisions to fire past neurologists. I hope you find someone soon.

Best WIshes, dawn

[briarrose]

Corina

I know Exactly what you mean. I thought I sent someone a letter about a week or two ago and then on one of my better days realized that I hadn't written it out on the computer, just in notes.

Sometimes I wish that I could hire a primary care doctor in another state and telecommute my appointments

Thank goodness for my cardiologist here, he's a lot like Dr. Grubb in his personality. He's too dang cute though.

Dawn

I agree that we have to wait long periods of time between appts to get help with our medical problems. We do put a lot of trust into our doctor's too not have it returned in kind. I know there are certain things I need every week from my doctor and it's hard to move quickly to find another one when you don't feel well and you need him for injections or IV tx.

I was thinking today that maybe I'm not a good patient because I'm not your typical whiner. I get uncomfortable trying to describe a symptom that I don't even understand myself and I don't like to be examined or touched anymore. I know I can be rather matter of factly, partly because I think that I'm pretty tough and can endure a lot of pain and the fact that I work in a setting that you must always remain calm.

thx for your responses

steph

[Guest tearose]

Hi Steph, was just browsing round and couldn't help but notice how good and strong you sound this evening. Are you as improved as you sound? Isn't it amazing what a difference a couple of days, a talk with friends and a few hugs can do for us? Just happy to know you are there...tearose

[Ernie]

Hi Steph,

I think that doctors are suppose to understand what a patient his describing because if we would be exactly able to describe the symptom there is a good chance that we already know the diagnosis. People have different personality and different way of explaining symptoms and decoding his part of taking the medical history.

Please, don't feel guilty for who you are.

Hugs

Ernie

[briarrose]

Tearose

Yep, it was being able to come here and talk to all of you, get support, love and understanding (does that sound like a line from a song .) I talk with my mom but it's not quite the same thing. I don't have a spouse or boyfriend and it's definitely not something you talk to your kids about so I'm very grateful that all of you are here

Ernie

I've been wondering a lot about this lately and I agree with you 100%. I think my doc stopped decoding over a year ago

You know more than anyone how many symptoms come along with this illness and they aren't all straight forward. Sometimes when we're not feeling well, we're not the best communicators. I often realize after I leave my doctor's office that I forgot to tell him something or it might be a couple of days before I realize I've left something important out.

Sometimes I get frustrated and lord knows how angry I was a year ago. Although the anger was more from trying not to give up and hang in there until I found the proper help. Anger from not being understood. Anger from not getting any help for problems that I recognized and the doctor's didn't and I don't have a medical degree.

Doesn't anyone else find it frustrating that you can get a lab test and be within the upper or lower end of the normal reference range but you don't feel well. Ex. Potassium level, when I start running low (but still in the normal ref range) I start getting horrible cramps but the doctor's don't acknowledge your problem. OK, I'm getting side-tracked. Just trying to justify all of it.

I think Ernie is right and I'm not going to feel guilty for who I am.

[Eillyre]

Hi Steph,

You seem to have more advice or help than I can offer, so I just want to tell you how much stronger and calmer you sound! Good girl! Keep up the positive attitude -- you'll make it! I'm sending you a hug and invisible Christmas cookies!

With love,

Angela

[Nicole's Mom]

Steph,

I agree with you regarding testing. For instance in one test the reference range could be as great as 4-600 and if you end up as low as 6 or as high as 585 - many a doc won't even imagine that maybe - just maybe - this is something to look at further. Plus labs differ from one another which could mean that you could be outside the reference range but the technique or the hurriedness of the lab worker might create a false "normal".

Also if you are really low or really high but still within the reference range the lab sheet won't indicate an "L" or an "H" and the doc- being in a HURRY- thus scanning ONLY for the L's or H's only- will miss that there is a significantly lower or higher number within the reference range.

Another thing is that you could actually be OUTSIDE the reference range and the doc might say - well you are "JUST" outside the range so there is no need look further -yet maybe it is just the situation that he/ she SHOULD look further.

Also regarding potassium- that can certainly be tricky. One could indeed have symptoms of low potassium if you are a low normal in the test but as long as it appears as "normal" on a piece of paper then as far as some docs are concerned - it is "normal" and thus he cannot imagine what one's symptoms could be from even if they are classic symptoms of low potassium. If you say- "but I know my body- I know that I get these symptoms when my potassium is on the lower side of what is considered normal" this statement might easily be dismissed by certain docs as docs often cannot imagine (because of how they were trained ?) that someone can actually "KNOW" their own body.

Back in the olden days before tests- docs had to use their noggin more and had to listen to the patient in order to assess what the heck was going on. Tests certainly have great benefits and can save someone's life in fact, yet on the other hand a patient can easily fall through the cracks by an improper or narrow interpretation of the test or if the lab is sloppy or if the doctor has narrow thinking, or if there is a low-level disrespect (or high level disrespect) for his/ her patients in general etc. etc and omits the patient's "anecdotal' experiences in his/her assessment of the situation.

I certainly understand your frustrations, Steph between Nicole having POTS and me having Lyme (Lyme has a medical politics war going on). There are lots of hurdles to jump when one has an illness that is poorly understood and so multifaceted. And when you are really tired and really want answers- the hurdles seem all the higher.

Having expressed all of this negative stuff- Steph, it is obvious that you are strong, determined, and highly intelligent which is in your favor. I'm so sorry that you have to go through all of this b.s. but you will prevail when all is said and done in getting the right docs and the appropriate care. I'm just so sorry that it is so hard for so many reasons- can I ever relate!! Meanwhle I am so glad for you that you have this great cardiologist (who is also so "dang cute") and that you have Dr. Grubb as well.

Take care,

Bev

[calypso]

Briarrose,

Sorry, I was gone for the weekend and just saw your info about the blood sugar test & fasting. Your small meal might have been enough to give a higher reading. Make sure your doctor orders a glucose tolerance test, and have it done very early in the morning so you don't have to eat.

Hope you're feeling better,

Amy

[Ernie]

Hi Steph,

I agree with what Beverly has just explained about lab results.

Also the range is built so that 95% (sometimes it 90% or up to 99%) of the populations falls within the inside of the curve. But if you are the exception and you are the 1% which has a seemingly normal result but for your body it's abnormal it will not be considered. The tests are based on averages, not on exceptions.

Also it might be biased by the person doing the test. For example, when I went to Vanderbilt last year I was suppose to stand for 10 minutes for the catecholamine test. After 1 minute the nurse realised that I was starting to faint so she layed me in bed for afew minutes and then made me sit for the following minutes. Then she made me stand for the last 30 seconds of the 10 minutes. She told me that if I could not stand for 10 minutes I would be disqualified from the protocol so I agreed to do it her way. So when I got the adrenaline and norepinephrine result, the doctor said that it was not that high. I was about x3 the norm but it was normal for someone about to faint. The sad part was that she wrote on the report that I stood for 10 minutes while I stood for 1 minutes, laid for 8, sat for 30 seconds and stood again for 30 seconds. When I told the doctor about it he did not believe me. He believed what the nurse had written on the report. So for me and research this result is nowhere showing what my real problem is.

When I did the same test at NIH, I stood until I fainted (it took only a few minutes and they took my blood while I was unconscious), and I was x20 times above the norm for adrenaline. I did not make it to 10 minutes but for them the important part was to know how high I get when I faint.

I think it is normal also to be angry and frustrated at the medical system because we pay for them and they (government, insurance companies, pharmaceutical companies) don't invest very much in dysautonomia research. We and our doctors get to feel helpless. Anger can also protect us from depression. (I am not implying that anyone is depressed). It gives us a motivation to move ahead and try to find solution. Also, it might not always be anger but determination and assertiveness!

Well, I hope I didn't say too much!

Ernie

[briarrose]

Angela

One can never have enough good advice. Thanks for the Cookies and hugs they make everything better.

Bev & Ernie

About lab reference ranges, it's funny that this came up. I was seeing my endocrinologist today and he actually brought up the old reference ranges for diabetics. I said so, 10 years ago before the reference range was changed patients would have symptoms and be disregarded and he said pretty much.

I would also have to agree with you about your statement regarding Potassium. I have had doctors listen to me and tell me that I don't have to be outside of the reference range to have symptoms and I've been told the complete opposite by another doctor. A little contradictory isn't it.

The hurdles are high trying to find a doctor right now. I've made several phone calls and talked to many people already. I just want to find the one person that I can spend the rest of my adult life seeing and trusting.

I'm very grateful about my 2 for 2 on the cardiology dept.

Ernie it would've infuriated me to have the nurse write false notes, that doesn't give you full credibility.

I'm 100% with what you said in your last paragraph. I would much rather be angry and doing something about my situation then laying in bed depressed. I've done the depression thing before and it's not for me.

You guys helped me through a really bad week and I'm very grateful. I feel so much stronger and sure of myself. I had a good talk with my endocrinologist and he too told me that he's always found me very straight forward and he gave me a few suggestions of people that I should call for a new primary.

Thank goodness for this support network!

[Miriam Poorman-Knox]

My dear first you must give this pompous doctor the information regarding pots from the dysautonomia foundation, I di have a symposium of the last comference.Your goal is to educatr educate educate!!!!!Are you from Wi? If so I know of a fine pcp Miriam

Edited January 12, 2005 by MightyMouse

[briarrose]

Miriam

Thank you for your response. It's funny but I made my doctor a notebook full of great information from the Web when I was first diagnosed. I made the same notebook for my cardiologist and endocrinologist. My cardiologist called and thanked me for all the information I sent him.

I live in Oregon but I wish I did live in your neck of the woods as its so difficult to find a good PCP that understands Chronic Illness. I'm still searching for a doctor and am keeping my fingers crossed that I won't need one until the search has ended. I still go into my doctors office for my weekly Epogen injection but I only see his nurse and she treats me pretty well but that is contingent on how he is treating me too. Last week when I went in for my Epo shot my blood pressure was about 82/50, she arranged IV fluids for me, thank god because it ALWAYS relieves the cramping muscle pain that I get when I'm hypovolemic.

I remember the day that I started this post and I'm so fortunate to have all of you here. When I came home from his office I was so distraught. It only took a day of everyones support here to put things back into perspective and reassure me of what I already know and that is I know what I'm doing and I understand the illness I have. That doesn't mean that I don't have a few down days but I've accepted my condition and I will do just about anything to treat it. With that said I think that we should be allowed to refuse certain things that we don't agree with and have support from our docs not criticism because we didn't do them.

I don't think I start rants very often but I can completely understand 100% why anyone would start this same one and I fully support them.

[Miriam Poorman-Knox]

Are you receiving I.V.'s at home? I started that in the summer and it has made a world of difference. Home Health delivers and can start them if needed. I see Dr. Low next week. What do you get the epo shot for? Thats new for me. Give me a week and I can come up with someone in your area who knows about POTS.

Peace Miriam

Edited January 12, 2005 by MightyMouse

[briarrose]

I have to go to my doctor's office or the hospital for my IV saline treatment, although I have plenty of friends that would come start me at home if I could get the supplies. The IV Saline has made a huge difference for me too. It relieves me of my symptoms so much faster and it gives me the boost I need to catch up on fluids myself, otherwise I feel like I'm playing the forever ongoing catch up fluid game.

The Epogen is to help increase my (Blood count) Hematocrit and Hemaglobin. Some of the thought process behind POTS is that if you're hypovolemic and you can increase body volume then that should relieve some of the symptoms. It also takes care of my anemia and it definitely makes me feel better. But with the Epogen injections I have to have IV Iron. The Epogen won't work without an appropriate amount of iron.

That would be greatly appreciated if you could help me find someone in my area, thank you!

Have you seen Dr. Low before? Are you going for a study or evaluation?

thx again for all of your input and help

Steph

[briarrose]

Miriam

It looks like you're having problems posting. Suggestion - go to the bottom of the page and hit add reply, it gives you a fresh box without the reply. If you need to see what you're answering then you can scroll down and back up. Not sure if this will help but just a suggestion

Oh and when you are done writing you need to hit add reply again!

steph

[lancewhit]

I think that running into arrogant, dismissive, angry doctors is an unfortunate fact of life for many of us with our types of symptoms. It was shocking to me at first. I remember one of the first neurologists I saw. When I tried to explain my symptoms to him, he got angry with me because I didn't have a clearly-defined illness--just a "vague set of symptoms" according to him.

I told him I thought that he as a doctor could analyze my symptoms and offer some diagnosis. That seemed to make him even angrier.

Since then I've seen a few other doctors with similar personality quirks--arrogant, impatient, annoyed, angry, dismissive, disinterested.

And of course I've been to one doctor who felt my symptoms were psychosomatic and that I should see a psychiatrist. And he was so unpleasant and openly hostile to me. I felt like telling him that he was the one who should see a psychiatrist. His behavior was so unprofessional--I seriously considered filing a complaint against him with his hospital but didn't want to get distracted by things like that when I'm trying to work on getting better.

I think a lot of these doctors are frustrated for several reasons--1) They don't know how to deal with patients with difficult symptoms; they don't have the time or the resources. 2) They're frustrated with the whole HMO/Managed Care system. The HMO system doesn't work too well for patients with difficult symptoms, like dysautonomia. And I think it's just not profitable for some of these HMO doctors to see patients who are not easy to diagnose or treat. 3) Some doctors seem to see the patient as an adversary rather than as a partner to work with to treat your symptoms. That's a strange behavior that I've seen a couple of times.

On the positive side, I can testify that there are many execeptional doctors out there. It sometimes takes a lot of effort to find them. But they're out there. I've met some wonderful doctors--caring, sympathetic, knowledgeable, professional. Doctors who take me seriously, treat me with respect, and are willing to work with me to try to diagnose and treat my symptoms.

So for every bad doctor out there, there's at least a few good ones. You just have to keep searching until you find them.

[Miriam Poorman-Knox]

Miriam

It looks like you're having problems posting.  Suggestion - go to the bottom of the page and hit add reply, it gives you a fresh box without the reply.  If you need to see what you're answering then you can scroll down and back up.  Not sure if this will help but just a suggestion

Oh and when you are done writing you need to hit add reply again!

steph

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THANKS MIRIAM