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zerohours000

No POTS? Clean EMG. Now what?

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Hi all.  I'm still new to this forum, but I'm not sure if I even belong here.  My neurologist flat out told me: "You DO NOT have dysautonomia."  Here is her full response to me:

"I feel that you may not be hearing things and retaining them well due to the sleep deficit. I will reiterate again what we discussed on the phone last week. I recommend that you keep this in your files to refer back to if you can't remember well. You have multiple symptoms involving multiple systems. Often we see this with dysautonomia so we tested you for that with the tilt table testing which was negative. You do NOT have dysautonomia. You also has muscle symptoms so we tested the muscle with EMG which also was normal. At this time we have found nothing significant neurologically to diagnose you with. I recommended that you see the sleep specialist to have them improve your sleep to see if that helps with all of your other symptoms. Best,"

Now, I am seeing sleep specialist next week, so maybe they can shed some light on all of this.  I still have: heat intolerance (especially in the sun, it makes my skin feel like it's burning up), decreased perspiration, lack of sleep, decreased stomach motility (gastroparesis), depression, anxiety, fasiculations, blurred vision, muscle aches, occasional dry eyes.  

Is it possible to still have dysautonomia without POTS?  Or does the tilt table test rule out other dysautonomias?  

I'm getting a second opinion on all of this.  But I just can't believe after two tests --- after diagnosing me with ZERO tests on our first meeting --- she then comes back with that.  I mean, I'd be happy if it weren't dysautonomia, obviously, but then what?  Anyone have any ideas?  Any input is invaluable.  Especially on what to do next.

 

Best,

 

Zer0

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Also, I found this doctor to be extremely condescending.  Her arrogance was only matched by her lack of humility when she found out her initial diagnosis was wrong.  

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All I can tell you is that there are several types of dysautonomia. POTS is a type that is characterized by increased HR ( tachycardia ) when upright ( postural orthostatic ). 

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I would seek a 2nd opinion.  Have you seen a rheumatologist?  Has Sjogren's been ruled out--I jut wonder bc you mention dry eyes.  Also have you been evaluated for vitamin deficiencies esp iron, B12?

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Unfortunately, I have found that doctors get very defensive or arrogant when they are wrong or can't figure something out. It seems to make them very insecure. I have had several experiences like this.

 

I'm in a similar boat. I seem to have dysautonomia but not POTS and it has yet to be nailed down.

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13 minutes ago, MomtoGiuliana said:

I would seek a 2nd opinion.  Have you seen a rheumatologist?  Has Sjogren's been ruled out--I jut wonder bc you mention dry eyes.  Also have you been evaluated for vitamin deficiencies esp iron, B12?

I am seeking out a 2nd opinion next week.  And I haven’t seen a rheumatologist yet.  But thanks for the advice.  My PCP wants to hang every single one of my symptoms on the mental aspect.  It’s very frustrating.

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14 hours ago, RecipeForDisaster said:

Unfortunately, I have found that doctors get very defensive or arrogant when they are wrong or can't figure something out. It seems to make them very insecure. I have had several experiences like this.

 

I'm in a similar boat. I seem to have dysautonomia but not POTS and it has yet to be nailed down.

Yes.  I let her have it though.  She really made me angry with her dismissive attitude and condescending tone, as if I were incapable of grasping her otherwise cryptic (mis)communications.

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Just reading her reply ticked me off. That's fine if her medical opinion is that this isn't dysautonomia, but the way her message reads is very condescending. There are ways to communicate these things and not sound like such a "mean girl." 

Definitely seek a second opinion. Fifteen years ago, I had a range of weird multi-system symptoms following a case of suspected mono. After three years and many specialists, I received the dx of fibromyalgia. Now, about 12 years after that, I've gotten a dx of autonomic dysfunction. Not saying I don't have fibro, but I think it's possible I've had autonomic issues all along and no one picked up on them until my cardiac symptoms really amped up. And even those were initially dismissed as anxiety 😡

It might be worth seeing a rheumatologist as well. 

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She did note that you have problems with several different body systems. There are so, so many things that can go wrong with the body. It's mind blowing when you do the research. Have you ever looked into SLE Lupus, or even Sjorgen's. I spelled the second disease wrong, but it is known to cause muscle issues, fatigue, sleep issues, dry eyes, gastroperisis, and a lot of other issues. I actually have symptoms of dysautonomia, but I think mines are from diabetes being out of control and not just born with a defective system. Even if you don't have dysautonomia, there are other things like chronic fatigue syndrome that can also cause these. Fibro. Believe it or not sleep apnea can really mess you up. I also have that and it can cause high BP and high HR and low blood oxygen. But the way the doctor is speaking to you is just wrong. Her tone is all wrong. She should be more compassionate towards you seeking an answer for your ill health. 

Dizzy, fibro causes a lot of alpha wave intrusions during sleep that disrupt the sleep cycle and cause body pain and brain fog. Sleep apnea can also be so bad that one feels like they're dying literally because it is so damaging to the body. If sleep disorders are ruled out, then you need to keep on looking for autoimmune causes. When there are multiple symptoms, there is always something causing it. I hope you find some answers. We believe, embrace. and support you. The most important thing is that you know what's going on. You will find answers. 

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Hi, it is so challenging and frustrating to have a range of crazy symptoms and not have answers. And dealing with condescending doctors is the worst. Most of us on this site have been there.  I hope you get a diagnosis and feel better soon.

I am not sure whether your focus should be Dysautonomia. While there are some similarities between your symptoms and Dysautonomia the main symptoms In Dysautonomia relate to heart rate and blood pressure. I agree  with the recommendation to see a rheumatologist or autoimmune specialist.

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7 hours ago, blizzard2014 said:

She did note that you have problems with several different body systems. There are so, so many things that can go wrong with the body. It's mind blowing when you do the research. Have you ever looked into SLE Lupus, or even Sjorgen's. I spelled the second disease wrong, but it is known to cause muscle issues, fatigue, sleep issues, dry eyes, gastroperisis, and a lot of other issues. I actually have symptoms of dysautonomia, but I think mines are from diabetes being out of control and not just born with a defective system. Even if you don't have dysautonomia, there are other things like chronic fatigue syndrome that can also cause these. Fibro. Believe it or not sleep apnea can really mess you up. I also have that and it can cause high BP and high HR and low blood oxygen. But the way the doctor is speaking to you is just wrong. Her tone is all wrong. She should be more compassionate towards you seeking an answer for your ill health. 

Dizzy, fibro causes a lot of alpha wave intrusions during sleep that disrupt the sleep cycle and cause body pain and brain fog. Sleep apnea can also be so bad that one feels like they're dying literally because it is so damaging to the body. If sleep disorders are ruled out, then you need to keep on looking for autoimmune causes. When there are multiple symptoms, there is always something causing it. I hope you find some answers. We believe, embrace. and support you. The most important thing is that you know what's going on. You will find answers. 

Thanks for the encouragement.  I have an appointment with sleep doctor in Tuesday.  Scheduling rheumatologist soon.  And even have infectious disease doctor on 20th.  Will keep everyone updated.

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6 hours ago, yogini said:

Hi, it is so challenging and frustrating to have a range of crazy symptoms and not have answers. And dealing with condescending doctors is the worst. Most of us on this site have been there.  I hope you get a diagnosis and feel better soon.

I am not sure whether your focus should be Dysautonomia. While there are some similarities between your symptoms and Dysautonomia the main symptoms In Dysautonomia relate to heart rate and blood pressure. I agree  with the recommendation to see a rheumatologist or autoimmune specialist.

I am indeed pursuing those avenues now, even though my PCP seems to think it’s all anxiety and/or depression—- which is also frustrating.  This all started as just feeling like I was coming down with the flu, then pains everywhere, especially my left groin, and then red spots developing in hands and feet (which went away), then various symptoms.  The onset was peculiar to say the least.

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Can or did your PCP run an ANA test to see if it is positive? That is a preliminary blood test for autoimmune. A Rheumatologist sounds like an excellent idea.

Did the other doctor do a QSART/SWEAT test? Was it normal or abnormal? Did they test for gastroparesis by eating the glowing eggs? Did they do a full adrenal work up?

Maybe I misunderstood but it sounded like because you passed the TTT, you were told you don't have dysautonomia. That isn't how it works. It is true that you may not have POTS or NCS.

I concur on the second opinion. It took several doctors who were absolute duds before I found one to help me.

Hang in there.

 

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17 minutes ago, KiminOrlando said:

Can or did your PCP run an ANA test to see if it is positive? That is a preliminary blood test for autoimmune. A Rheumatologist sounds like an excellent idea.

Did the other doctor do a QSART/SWEAT test? Was it normal or abnormal? Did they test for gastroparesis by eating the glowing eggs? Did they do a full adrenal work up?

Maybe I misunderstood but it sounded like because you passed the TTT, you were told you don't have dysautonomia. That isn't how it works. It is true that you may not have POTS or NCS.

I concur on the second opinion. It took several doctors who were absolute duds before I found one to help me.

Hang in there.

 

Nope.  None of that.  I’m moving in from this neurologist.  I’m not even sure how to get those tests.

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I just wanted to add my 2 cents. I was told by my first cardiologist that it was my anxiety and smoking causing my symptoms. Refused to put me on a tilt table. I walked into his office with my HR 106 sitting. I did a poor man’s tilt table everyday for a month. Brought it to my PCP who said that was weird. So she sent me to another cardiologist who agreed my results were unusual. He had no experience with POTS. He put me on the tilt table and it came back positive. We eventually found a specialist in my state who redid all my testing plus some and diagnosed me with POTS and Autonomic Dysfunction. If you know something is wrong keep trying. We have to be our own advocates. Currently I don’t have an underlying cause but i hope to find it. My 15 year old son is showing signs and symptoms and the doctors so far are doing nothing. I may end up having to make him an appointment with my specialist. Good luck to you and i hope you find your answers, whatever they may be. 

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13 hours ago, StayAtHomeMom said:

I just wanted to add my 2 cents. I was told by my first cardiologist that it was my anxiety and smoking causing my symptoms. Refused to put me on a tilt table. I walked into his office with my HR 106 sitting. I did a poor man’s tilt table everyday for a month. Brought it to my PCP who said that was weird. So she sent me to another cardiologist who agreed my results were unusual. He had no experience with POTS. He put me on the tilt table and it came back positive. We eventually found a specialist in my state who redid all my testing plus some and diagnosed me with POTS and Autonomic Dysfunction. If you know something is wrong keep trying. We have to be our own advocates. Currently I don’t have an underlying cause but i hope to find it. My 15 year old son is showing signs and symptoms and the doctors so far are doing nothing. I may end up having to make him an appointment with my specialist. Good luck to you and i hope you find your answers, whatever they may be. 

Well.  I have to say that I do believe I don’t have POTS.  As my HR never is high; though I’ve had some palpitations.  My hunch is autoimmune underlying autonomic dysfunction.  My PCP is also lazily suggesting anxiety and trying to convince me this is all stemming directly from my brain misfiring.  While that may be—-what poor scientists they are to not run any tests on me.  Thank you for your well wishes.  Hope you feel better as well, and your son too.  This has been a nightmare.

Best,

Zer0

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2 minutes ago, zerohours000 said:

Well.  I have to say that I do believe I don’t have POTS.  As my HR never is high; though I’ve had some palpitations.  My hunch is autoimmune underlying autonomic dysfunction.  My PCP is also lazily suggesting anxiety and trying to convince me this is all stemming directly from my brain misfiring.  While that may be—-what poor scientists they are to not run any tests on me.  Thank you for your well wishes.  Hope you feel better as well, and your son too.  This has been a nightmare.

Best,

Zer0

I agree on the nightmare. I have been dealing with symptoms for 3 years. Diagnosed a year and a half ago. Only reason i have my diagnosis is because i found it and requested my testing. My main symptom is shortness of breath and unable to get a full deep satifying breath. My doctors were stumped. I believe i have had POTS since i was a teenager but no way to prove it. HR is key. Swept my back patio a few weeks ago and felt like i was dying. HR hit 172. I mostly do ok now i know what i have and my Garmin HR has been a life savior. The biggest thing is the change in HR. If your normal resting numbers are 50 when lying down and 90 when standing you can have POTS. My normal resting is 80s so i start high. 

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1 hour ago, StayAtHomeMom said:

I agree on the nightmare. I have been dealing with symptoms for 3 years. Diagnosed a year and a half ago. Only reason i have my diagnosis is because i found it and requested my testing. My main symptom is shortness of breath and unable to get a full deep satifying breath. My doctors were stumped. I believe i have had POTS since i was a teenager but no way to prove it. HR is key. Swept my back patio a few weeks ago and felt like i was dying. HR hit 172. I mostly do ok now i know what i have and my Garmin HR has been a life savior. The biggest thing is the change in HR. If your normal resting numbers are 50 when lying down and 90 when standing you can have POTS. My normal resting is 80s so i start high. 

I really hope you the best.  I should probably get re-tested once I see my new neurologist.  I also heard there were different tilt tests after reading the book The Dysautonomia Project.  My biggest things right now are just lack of sleep, weird body temp things, dry eyes, some stomach dismotility.  I was working two jobs and had to quit the primary one.  There was no way to do it.  

 

I just took my HR standing and sitting and they were both 72.  

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I would definitely try to find a good neurologist. If your HR looks good there are other things. I would maybe get your eyes checked out too. My sister in law got her MS diagnosis started from seeing an ophthalmologist. Sometimes you can stumble on your diagnosis from someone unexpected. 

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41 minutes ago, StayAtHomeMom said:

I would definitely try to find a good neurologist. If your HR looks good there are other things. I would maybe get your eyes checked out too. My sister in law got her MS diagnosis started from seeing an ophthalmologist. Sometimes you can stumble on your diagnosis from someone unexpected. 

I’ll try anything at this point.  As you can tell, it’s almost 4am here.  My insomnia is so out of control.  

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With a positive ANA and a family history chock full of autoimmune diseases, I would add a Rheumatologist to this mix ASAP. My Rheumatologist got me started on Pulmonary Functions Testing as a baseline for the future. He also realized my other symptoms were no joke and sent me to the guy who diagnosed my dysautonomia. I went to a University hospital for this, but it was worth the drive.

The Bernie Mac disease is called Sarcoidosis and it has a parallel disease called neurosarcoidosis. Not saying you have it, but that ANA needs to be checked and consistently followed by a licensed Rheumatologist. I started with a positive ANA and nothing else... called Undifferentiated Connective Tissue Disease. It still needs medication. Then it was positive for lupus, then negative, now positive for Rheumatoid Arthritis. My diagnosis has changed to Mixed Connective Tissue Disease. There is SO much it could be with a positive ANA. Getting the autoimmune side under control helped my dysautonomia some. It wasn't a magic cure, but every little step counts.

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On ‎6‎/‎10‎/‎2018 at 1:44 PM, KiminOrlando said:

With a positive ANA and a family history chock full of autoimmune diseases, I would add a Rheumatologist to this mix ASAP. My Rheumatologist got me started on Pulmonary Functions Testing as a baseline for the future. He also realized my other symptoms were no joke and sent me to the guy who diagnosed my dysautonomia. I went to a University hospital for this, but it was worth the drive.

The Bernie Mac disease is called Sarcoidosis and it has a parallel disease called neurosarcoidosis. Not saying you have it, but that ANA needs to be checked and consistently followed by a licensed Rheumatologist. I started with a positive ANA and nothing else... called Undifferentiated Connective Tissue Disease. It still needs medication. Then it was positive for lupus, then negative, now positive for Rheumatoid Arthritis. My diagnosis has changed to Mixed Connective Tissue Disease. There is SO much it could be with a positive ANA. Getting the autoimmune side under control helped my dysautonomia some. It wasn't a magic cure, but every little step counts.

I waited 2 hours to see my doctor today to only again tell me 1.) my normal tilt table test = no dysautonomia and 2.) wouldn't give me an ANA test.   I am so upset.

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1 hour ago, zerohours000 said:

I waited 2 hours to see my doctor today to only again tell me 1.) my normal tilt table test = no dysautonomia and 2.) wouldn't give me an ANA test.   I am so upset.

IMO Time for a new doctor ASAP. I had to do it too. Many of us did. Red spots don't just happen for no reason. This explanation seems illogical to me. 

I have heard of insurance companies rating doctors by the way they control costs. Doctors who run too many tests don't get their contracts renewed. I don't know if this is the case here, but you clearly aren't going to get anywhere with this one. 

Keep going. Hope you find answers and pls keep us updated.

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2 minutes ago, KiminOrlando said:

IMO Time for a new doctor ASAP. I had to do it too. Many of us did. Red spots don't just happen for no reason. This explanation seems illogical to me. 

I have heard of insurance companies rating doctors by the way they control costs. Doctors who run too many tests don't get their contracts renewed. I don't know if this is the case here, but you clearly aren't going to get anywhere with this one. 

Keep going. Hope you find answers and pls keep us updated.

Out of curiosity, did you red spots go away?  And where did you get them?

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I got them on my chest, arms and abdomen. They did go away after about a week and a half. My Rheumatologist  (the 2nd one) said it was likely a lupus rash. The first one told me I had developed a sudden allergy to the soaps and shampoos that I had been using for 10 years. He also told me I didn't have an autoimmune disease. My PCP ran the ANA. Well, my new PCP. I called my actual PCP the day it happened and they told me it was just the flu and they didn't have time to see me. Got my new PCP the next day. 

The road to help is rarely smooth.

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