Neurological Or Not?

[friday7]

I'm trying to understand this because I'm really having a hard time with Neurological symptoms. Is P.O.T.S. a neurological disease or not?

It is listed as a Neurological disorder on the National Institute of Neurological Disorders and Stroke site.

I know it falls under the category of Dysautonomia. Yet all of the neurological specialist I've seen have said I do not have Neurological problems because I do not have a neurological disease. The first two had never heard of P.O.T.S.

I recently saw a new Neuro. I started seeing her when I was getting numbness in my legs. I also was getting trouble breathing and burning mouth. I have gotten a lot of neuro type symptoms off and on over the years.

She is very nice. And she is really trying to help me. She's done all kinds of tests. And seems to really believe I am having physical problems., yet she is not taking me on as a patient. She is doing one more test. Problem is she's done a lot and hasn't found anything. So she is not going to treat me unless she finds something. Problem is I have something. Just not something she can find.

I told her I saw a Cardiologist but that I have all of these Neurological problems, how can I get that treated. She said usually Cardiologists treat P.O.T.S. I asked her, how is the Cardiologist suppose to help me with the neurological symptoms of P.O.T.S. when she does not treat those things. Never mind the fact that the Cardiologist has said that basically the only thing I could do was take florinef , mestinon and salt and that's about it.

I am getting the feeling that what is really going on here is they don't know much about P.O.T.S.

Which is a problem because they've been the nicest and most knowledgeable people I've run into in years.

Nothing much shows up on tests. But I have been diagnosed with P.O.T.S. So why isn't that enough? It's like they are looking for a disease to treat when I already have one.

I've very confused how you get Neurological symptoms treated when you don't have what they want.

I know some of you see one. How did you get them to treat you?

Some Neuros have made me feel that they should not be treating me. One guy said I was 'cleared" for Neurology..Tell that to my burning mouth and numb leg. When a Neurologist says you're clear it does make you think, I guess he's right.

So, Is P.O.T.S. really something that they should be treating?

I know that I have Neurological symptoms but how do I get help with them?

I have a real thing Called P.O.T.S. yet I honestly don't feel like I have anything because everyone acts like they should not be expected to treat me.

Sorry if I'm ranting just fed up today.

[angelloz]

Plenty of us have small fiber neuropathy or autonomic neuropathy. Tests for those include various tests like the qsart and sweat tests...skin , tissue punch test, etc... Have you had those?? However to say there has been treatment for those things, I have not had any. My main treatments include fluid loading, leg exercises, supplements to keep potassium in range. Most medications have caused problems with my migraines. It is confusing coordinating cardiology and neurology.

[fitnesskelly]

I'm just throwing this out there...not saying this is true for you...dysautonomia can be a symptom of something else. Have you been tested for things like various autoimmune diseases that would cause neurological symptoms?

[ks42]

Yes, POTS is a form of dysautonomia, and dysautonomia is a neurological disorder. However, it is a disorder of the autonomic nervous system. You have two main nervous systems in your body: the CNS (central nervous system) and the PNS (peripheral nervous system). The autonomic is a branch of the peripheral nervous system. General neurologists are trained to look for diseases that mainly affect the central nervous system. They are educated in diseases of the peripheral nervous system too, but not with a lot of detail and emphasis placed on the autonomic system. This is partly because, up to this point, autonomic issues were supposed to be extremely rare, so more time and energy is put on disorders of other parts of the nervous system. So when they say you don't have neurological issues, that may mean they've just ruled out disorders of the CNS and somatic branch of the PNS.

One thing that might help is to ask specifically about autonomic neurological issues. Let them know you're aware POTS is an autonomic nervous system disorder, which is tested for and treated differently than most other neurological issues, and ask what your options are for testing and treatment of this disorder. As someone mentioned above, it requires autonomic reflex testing (QSART, valsalva, breathing tests, tilt table) which is different than other neurological disorders. Don't hesitate to bring in research (for example, some of the basic papers written by Dr. Grubb can be extremely helpful). In my experience, I haven't gotten a ton of help from cardiologists or neurologists who don't specifically specialize in autonomic disorders, so I had to seek out specialists in autonomic disorders before I was really properly diagnosed and treated.

[statesof]

Hi friday7, I have many neurological symptoms that go along with my POTS/migraine/depersonalization disorder diagnosis. I think one of the troubles that I find most difficult or irritating is that my migraine specialist knows nothing about POTS, the autonomic specialist doesn't know anything about migraine or depersonalization disorder, so I run into the problem of my doctor saying that yes I have POTS but that some of my symptoms are not POTS related, but then there is no answer of who to go to from there.

[friday7]

Thanks for the answers everyone.

angelloz

I have been tested for other autoimmune diseases so far nothing. I have had a couple of Neurological tests done lately. I had a cat scan, an EMT I think it's called, and a tissue punch test. The last one I haven't gotten a result from yet.

Most of my treatment has consisted of getting my BP up with Salt tablets. That helped quite a bit. And after I had my oophorectomy that helped a lot as well. But these Neurological symptoms. They weren't that bad at first. But now it seems they are worse and aren't going away. My Dad had Neuropathy from Diabetes and what I feel sounds just like what he described. Being that people with POTS also have these issues I find it hard to believe that's not what this is.

ks42

I find it very interesting that there are too two main nervous systems in your body. I wonder if the tissue punch test and the others I had can help diagnose something wrong with the autonomic nervous system? I knew they say POTS is a dysfunction of the autonomic nervous system but I didn't realize that they mostly test the other.

I will have to gather up something to support the facts I am learning about POTS.

How do you find a autonomic specialist? Well actually I should say one that takes Medicaid. That's the trouble with getting help too. Medicaid covers the bare minimum so it'd be hard to find someone that would specialize in that I guess.

statesof

Yes one of the problems I have is getting treatment from one doctor. I am being sent to specialist to specialist and I know the GP is supposed to put it all together but they don't. They treat me as a healthy patient that has a lot of separate problems.

I have a question about the tilt table test though. I thought that test was mostly to diagnose POTS. Is there other information they can gather from it?

Also what happens when a normal person stands up? I mean I know that people with POTS heart rate raises 20 to 30 BPM within 10 minutes..what does it do in others that don't have POTS?

[statesof]

Well from the tilt table test usually they do a sweat test with it to see if there are any irregularities with your bodies sweat response, and a valsalva maneuver test (think that's right) that sees how your vitals are affected the breathing rhythm. And then with the actual tilt table they see how much your heart rate increase upon standing +35 points usually is indicative of POTS, but they also see how your blood pressure is affect by this over time. For normal people I don't believe that they have the large heart rate increase.

[ks42]

Yes, a tissue punch test - if they are looking for small fiber neuropathy - can help diagnose autonomic issues. There is a list of autonomic specialists on the DINET website. Some of them may in fact take Medicaid, I know there is one near me that does. You'd have to probably call the offices and see: http://www.dinet.org/index.php/physician-list

If there isn't anyone near you (and that happened to me at one point, when I was living really far away from autonomic specialists and couldn't travel), here's what I do: Call around to every EP (electrophysiologist) and neurologist's office in the area (if you're in a large city, maybe not every single one, but as many as possible). Ask if the doctor (or doctors) on staff are familiar with POTS. If the front desk doesn't know what you're talking about (highly likely) ask if they can check with a doctor or office manager and call you back. If they are familiar with the disorder, ask if they've had many patients who have had it. Ask what tests (if any) they order or have available for autonomic dysfunction. For example, do they have access to tilt table or autonomic reflex screening? QSART? I found most offices were willing to answer these questions, once I explained that POTS is very rare and I'd been through many doctors who couldn't help me. They understand not wanting to waste the time of someone who is chronically ill, as well as not wanting to waste the insurance company's money.

Also, as far as a tilt table, yes, a tilt table test alone just looks at heart rate and BP (diagnoses POTS, orthostatic hypo or hypertension, and syncope disorders). However, many specialists will do something called Autonomic Reflex Screening (ARS), which is a tilt table test combined with a bunch of other autonomic tests (which Statesof was referring to).

Additionally, keep in mind that POTS is a syndrome, not a disease. Meaning, it's a collection of symptoms that are caused or triggered by an underlying disease. In many people, they can't find the cause, and just call it "idiopathic POTS" and treat the symptoms. So you want to make sure your doctors are aggressive in trying to find the underlying cause of your POTS in the beginning, because many things - including toxins, hidden chronic infections, autoimmune disorders, paraneoplastic disorders, carcinoid syndromes, endocrine disorders like Addison's disease, mast cell disorders, genetic disorders, and structural abnormalities of the brain and spine (to name just a few) can cause or mimic POTS and/or dysautonomia. Sometimes finding and treating the underlying cause is the only way to treat the POTS. To get my POTS figured out, I have a team that includes a POTS specialist, infectious disease specialist, biotoxin specialist, pulmonologist, gastroenterologist, and nutritionist (and getting my illness figured out is still a work in progress).

[friday7]

Thank you statesof and ks42.

It think I have a better understanding of this. I will try what you suggested about the doctors. It's really hard for me. I have social anxiety, so making phone calls in general is really hard for me. But I am at that point where I feel I have gotten all that my present doctors are going to give. I will have to learn to call doctors office asking questions. It's very hard because you don't get very many people willing to take time with you. I know I have to persist. It's just hard.

[corina]

Friday, could it help you make these calls when you pretend to ask all this for another person, someone who is really close to you? I found out that I find it much easier to be assertive when it isn't about me (I thought that really odd for why could I chase doctors for loved ones, ask difficult questions and not for myself?). This helped me overcome my fears, nowadays I find it much easier to advocate for myself!

[fitnesskelly]

I agree with Corina. I'm a terrible advocate for myself, but great for someone I love. I'm going to use her suggestion for myself in the future.

And if you still feel nervous, just remember that the doctors "work for you" (in a sense). They are in business to help people who need their help.