Something the doc said bugs me

[friday]

I have seen a neurologist twice. I told him of my symptoms and he did a MRI. When I came back the 2nd time he said good news no MS. So yes, that is good news but then he said that it seems my problem isn't neurological. So, I'm like what about the apnea I told you about, where I wake up gasping for air. If it's central, that's neurological. And he talked about a sleep study. I wasn't so much interested in that because it doesn't happen that often, but I was telling him about it because I thought it was one more thing, besides these feelings I have, numbness, breathing problems, and restless leg, that seem to be related to a neurological disorder. So again he says he clears me for neurological disorders. So I say isn't POTS neurological? And he goes; now you're going from MS, to apnea, to POTS. Like I'm just jumping around from one thing to another. So I stopped him and go; No, you were looking for MS, I told you I thought it could be POTS the first time I saw you. Also the only reason I mentioned the apnea was to show that I think these others things are probably also neurological. At least there's enough evidence to point in that direction. I told him of my charting my Blood Pressure and heart rate, and he laughed. Which I got PO' ed at told him there is no reason an intelligent person with a BP monitor can't do this, and the results I've gotten are the same as POTS patients. So after that he said okay lets get a record of your bp, I'll send you to a cardiologist. So again another doctor. I don?t mind, if I am heading in the right direction. It 's just that they (doctors) confuse me so much when they are supposed to treat neurological problems and they say you?re clear because your MRI is okay. What I think is happening here is that he doesn't know much about POTS and is basically saying go to the cardiologist for that. But the way he says your clear neurologically bugs me. It seems to me I'm clear with what he knows, about which seems to mainly be MS. I'm just looking for some feedback here. As far as I know the MRI doesn't detect POTS. And as far as I know POTS is neurological right?

Friday.

[Dawg Tired]

I think most of us have been diagnosed by electrophysiologists. Not all of us but probably the vast majority of us. The neurologist - and a couple of cardiologists I have been to had tld me it was all in my head and it was just stress... ALL women my age have these problems... It was all anxiety... I was depressed... I needed to get more exercise ( I was walking 2 miles a day when I got sick!)... I needed to lose weight... You get the picture!

[Ernie]

I have been tested by a neurologist who said I have Munchaussen. Then I went to see an internist who said I had Psychogenic Syncope. Finally, I went to see Dr Grubb and Dr Golstein who told me I have POTS and NCS. The immediate cause of my problems is way too much adrenaline. This is not neurological or cardiological. I wonder if it is endocrinologic.

I am followed by an electrophysiologist now.

I guess it depends on your etiology.

Ernie

[MomtoGiuliana]

So sorry your doctor has been so difficult.

I don't understand how he can say you are "clear neurologically" just b/c of an MRI. When I saw a neurologist (during my long attempt at diagnosis), the MRI was one of at least 10 tests she did. But, anyway, good that he has referred you to a cardiologist. Have you had a tilt table test? If not, that's probably the next step, along with finding someone who knows something about POTS--probably an electrophysiologist, as a previous post stated too.

Best wishes. Diagnosis can be a long process.

[ethansmom]

I agree that it depends on your individual case. Some people have more problems neurlogically, others are better followed from a cardiac aspect (such as those with MVP), and still others have better luck with endocrinologists (those with thyroid problems, Addison's disease, etc...). It depends on your own experiences with POTS, and from which aspect you are diagnosed.

But I do think that there are more tests than just an MRI which will "clear" you. Everything can come out just fine and you can still have POTS. It's good that you are sticking to your guns and being assertive, though...that is the only way you will get anywhere in most cases

[morgan617]

wow, a complete body diagnoses from an mri. i've got to meet this God....not. how annoying. i would get his notes from my visits. and not see him again. if a doctor laughed at me i fear my parasympathetic would kick in and i'd do bodily harm. but that's just my coping mechanism.... i am so sorry you had this completely crummy visit. see the cardiologist. you know the first doctor that mentioned dysautonomia to me was my ear nose and throat. weird huh. hope you can find a decent cardiologist and things get better. morgan

[Herdswoman]

"Something" the doc said bugs you? How about "everything your doc said bugs me?" I am an RN of 20 years and it sounds like this guy is a real dog (god spelled correctly for those who deserve it the most.)

I know I'm windy. In advance, PLEASE FORGIVE ME. But any nuggets of wisdom I have were hard earned and paid for with a price, believe me. No need for anyone else to make the same mistakes I have. I've looked like a natural dork many, many times......but eventually I caught on. So here goes:

When he offers you a cardiology consult, take it and say thank you. Then ask for a referral to one who is also an electrophysiologist. Demand if you have to, but do it with a smile and a calm voice. Since you don't have a diagnosis yet, an electrophysiologist is the best place to start. Besides, how else could Mr. Dr. Dog Neurologist prove you wrong? " Yes, Doctor, I think a cardiologist would be very helpful. Thank you. Don't you think an electrophysiologist would probably provide the most definitive answer?" Just suggest the correct answer and he'll figure it out. Then it'll be all his idea and he can still be a genius. Kinda like being married, lol!

Do be careful how you present yourself. Getting a doc to do what you want is like taking an unhappy cat to the vet. Unless you handle him right, you're going to get scratched. You were the one who brought up your sleep apnea as an example of a neurological disorder, but when he offered you a sleep study, you said you weren't interested. To him, that was backpeddling at least. At the worst, it was arguing and looking like a hypochondriac. If you had played that hand a little differently and said OK to the sleep study, that would have left the door open to ask about POTS without appearing to jump from one diagnosis to the other. A lot of these guys really, really need to be right, need to be the "authority". So play the game, stay one step ahead of them and do NOT do anything to present yourself as arguementative or noncompliant. Like on Jeopardy, you must state your answer in the form of a question, lol, but true. And if you don't get the response you want, just calmly say "I'm not sure I understand. I thought it was like this _________? "

But the name of the game here is Getting What You Want. And the bottom line about mentioning other disorders (like sleep apnea) is do NOT mention it unless you want the treatment for it. Most docs will not see an accumulative pattern of symptoms that encompass other disciplines as they tend to look only at their little slice of the pie. So get your cardiology/electrophysiology referral. And a sleep study too.

As for POTS being neurological, I don't know if it is or not. A year ago I couldn't pronounce "dysautonomia" and now I are one........ I tend to think of it as a neuro-cardiological disorder.

Food for thought: What do they call the guy who graduated last in his class from med school?

They call him Doctor.

[friday]

But the name of the game here is Getting What You Want. And the bottom line about mentioning other disorders (like sleep apnea) is do NOT mention it unless you want the treatment for it. Most docs will not see an accumulative pattern of symptoms that encompass other disciplines as they tend to look only at their little slice of the pie.

Thanks for the advice. It's true I should've just kept the apnea to myself because it just got in the way.But I was kind of shocked that just because of a good MRI he was clearing me of anything nuerological problems. Anyway, I didn't really explain that right. He didn't offer me a sleep test, he just mentioned they had such things. He wasn't going to send me there. I didn't actually tell himI wasn't interested.

I just meant It wasn't the reason I brought it up.

I had been through a sleep study before and they said I didn't have an apnea episode that night. Although it was only three hours. They said I could get occasional episodes but, it has to happen like 100 times in order fort them to think it was a problem.

I actually never even heard of an electrophysiologist. I wish i had known of this when I was at the neurologist. I could find out if there are any electrophysiologist/cardiologist I could see, because he didn't give me a referral to the doc he just writes a script saying I should see one.Then my primary doc has to refer me.

Thanks also for the advice on dealing with docs. It's so hard, because most of them have this attitude of you know nothing you're just a patient, but unless you bring things up they shove you out the door before you know what happened. I could really use a book on how to deal with doctors.

Friday

[blackwolf]

Oh Boy! Personally I would do as suggested, get a referral to an electr. cardio. And as to being dx'd, it was my ob/gyn who first suggested POTS. I hope you have better luck on the next go around with doctors.

Blackwolf

PS I also had a nuero who suggested I needed to get out more and lose weight. Count him as fired!

[Ernie]

Hi Herdswoman,

Thanks for the advice on how to deal with doctors. I too need the advice because I keep using the wrong approach. I need to learn how to handle "the cat"! I am slowly getting better at it.

Ernie

[yogini]

Friday, I just wanted to add that I went to three different neurologists in my area, all of whom said that my nervous system is perfectly fine. One of them insisted I had an inner ear problem because I felt dizzy. But I clearly have POTS (which has now been confirmed by 4 doctors, including Dr. Low). I think the problem is that most neurologists specialize in the central nervous system and don't know much about POTS or the autonomic nervous system. So you may want to get diagnosed by someone who has experience in treating POTS. potsplace.com has a list of physicians, so hopefully there is one in your area.

[wareagle]

Hey Friday..sorry to hear about all you are going through..sounds a lot like me!! My suggestion would be go ahead and have the TTT...it's not "horrible"..I'm not sure why your doc. keeps saying that. I read in a previous post that you've had blood work done..have you been tested for EBV, CMV, and Lyme Disease? Have you had an ANA and Sed rate taken? I know it's difficult..before I was diagnosed I had so many questions..and fears. Even now it's not easy..I've just begun treatment and worry about my future. I do take comfort in the stories of others here and knowing that there is a life after POTS!! I would try to find a doc in your area who is a specialist..if not..are you able to go to a clinic..Mayo..Clevland..Houston...I went to mayo and liked it b/c they did all the damb tests in one place in about a week! I hope that things start looking up for you..and me..and everyone here! Keep your chin up and know that you are NOT alone!

[friday]

Hmm I posted here before but it doesn't seem to have gone through. Ok i'll try again. Yes, I was testesd for lyme disease. And I'm pretty sure EBV too. No abnormals results. I've had a high ANA. I was also tested for lupus and don't have that. My sed rate was high. I think. well, I know it was abnormal. It's been a while since I had that done so i'm not sure if it was low or high but it wasn't normal.

I had postive CMV and HSV tests. An alternative doc had that taken. When i saw

my regular doc he acted like that was nothing. I'm set to see an alternative doc soon so i'll ask him about it.

Someone had suggested the Mayo clinic to me, and it sounded great but I have a Medicaid HMO so I didn't think they would pay for that. They don't want to pay for anything. Three regular docs have dropped me this year because they don't get enough from them.

Thanks for the encourangement. I could use that right now.

friday