Introduction And Question Re Neurologist Or Ep/cardiologist

[kewi]

Hi all, I'm new to the forum -

My overview, feel free to skip to the question at the bottom! -

I've been a nephrology patient since the age of 14 - I'm 22 now. I had a previous hx of frequent kidney infections and was finally referred to a specialist where I discovered I had bilateral reflux into my kidneys - I had the deflux procedure done at 17, and then at 19 came back with recurrent infections and discovered I had large stones in my kidney. I had those removed and have been on propholactic antibiotics, diuretics, and potassium supplements since.

I was constantly complaining to different nephrologists (including one at Mayo) that I'm so tired, I don't want to go out with friends, I had chronic daily pain in my back, and I had blood in my urine still on occasion without infection. I even broke down in his office crying about it. I think that my fatigue was written off with my other symptoms.

The first time I passed out I went to the ER and was dx with a kidney infection, after that every time it happened I assumed it was just my kidneys again. I eventually passed out during a clinical for school (I'm a nursing student), they called a code over the hospital so several doctors responded - I have to say that was the longest I've been completely out, I had a full staff around me while I lay on the floor, a pillow under my head, and a blood pressure cuff on before regaining any conciousness. The doctor responding suggested I get a full cardiac workup, I was surprised, but I did.

I had a holter showing tachycardia, some PVC, some SVT - but otherwise pretty normal. From that point I had a TTT (positive), Treadmill stress test (My BP dropped 8 minutes in and I nearly passed out), Echo was fine, and ended up getting a cardiac catheterization which showed normal coronary arteries. I had these tests done by a cardiologist, he placed me on 25mg of metoprolol, but when I was still complaining of blackouts upon standing he refferred me to an EP who added midodrine.

**

My cardiologist told me I have NCS/Tachy/Orthostatic intolerance- After reading about symptoms of POTS and checking off majority of all of them, I printed the information from this site and brought it with me to my next appointment. I asked him if he heard of it and he said he had. He then told me basically that I have that, and it's all basically orthostatic intolerance?

When I went to the EP, the nurse was VERY helpful as she has NCS .. but we never discussed POTS

Could someone please explain to me if there is any benefit to actually being labeled with POTS vs NCS/IST/Orthostatic intolerance, would my treatment be any different?

Also, should I be seeing a neurologist?

I'm new to all of this, but because my insurance deductible has been met for the year I would like to get any testing done that might be beneficial for continuation of treatment before the end of the year.

[Katybug]

Not feeling well so short answer today ...

It may help to see an autonomic specialist (that could be cardio or neuro) as there are other autonomic tests that may help with your treatment. Also your case is probably complicated by your kidney issues, especially taking diuretics, having an autonomic specialist on board seems like it would be wise. There is a list of specialists here on the Dinet site that can help you lo ate someone.

[imapumpkin]

YES. SEE A NEUROLOGIST. One who SPECIALIZES in dysautonomia. Your treatment will be different because POTS can be caused by different things but it is a dysfunction of your autonomic nervous system, it's not just that you have orthastic intolerance--they are not the same thing even though POTS causes orthastic intolerance. Getting an official diagnosis will not only help doctors treat you but you will become more familiar with how to manage your symptoms.

ALSO, it's helpful to know that it's POTS because it doesn't just affect your blood pressure, it affects many facets of your health. For instance, if a Doctor or Dentist knows you have POTS (and actually knows what it is) they won't give you Novocaine or epinephrine which will seriously screw with your ANS, and you have to be much more careful going under anesthetic because it's a neurological rather a cardio problem and you will need to be more closely monitored during surgeries, etc...all good things to know for future treatments. I'm not sure why your Cardiologist would tell you that POTS is basically all Orthastic Intolerance because it's much more complicated than that and by refusing to actually diagnose you with POTS even though he says that you "basically have it" he's denying all the neurological aspects of the condition that need to be addressed.

If you went through the checklist and really feel like you fit the criteria for POTS definitely try and see a neurologist who specializes in POTS or Dysautonomia, the doctor needs to be treating the whole picture. Good luck. Here's the list from the website: http://www.dinet.org/physicians.htm