zerohours000

3 hours ago, Shannoncr said:

my mom is an LPN but she’s smart enough to be a doctor. for years, she worked on the labor & delivery unit at children’s hospital of buffalo. she then went on to work for OBGYN private practice but she wore many hats there. 

I think I am having joint pain. I can’t tell if it’s my joints or my tendons. my hips keep locking and I have to pop them in order to be able to move comfortably. my ankles are sore but it’s not the ankle bone, it’s where the top of the foot meets the ankle. sometimes it feels like they’re getting stuck & they give out on me often (they always have given out on me, as a kid in gym class it was so embarrassing)  my shoulders are sore. My elbows hurt but it’s the inside of my elbow. my fingers & wrists are really sore. my index fingers, at the top knuckle, are twisted slightly towards my middle finger. my thumbs, I notice it more on my left hand because I am left handed, hurt but only when I am writing or using them where they have to be pointed inward towards my palms. my left thumb knuckle is about twice the size of my right. my left knee is swollen on the left side of the knee cap & I have a bakers cyst behind the knee. my neck is sore & tender to the touch. my jaw often locks & cracks (that’s pretty painful) I am exhausted all the time. I get winded easily. my muscles in my arms & legs feel like I’ve been doing push-ups & squats all day. Driving is hard because of this. my arms are so heavy on the steering wheel lol. I get headaches almost daily. I am so winded all the time. I do have really bad pain in my sternum (sometimes it cracks when I stretch) & it hurts pretty bad when I breathe deep. I’ve had this before & it has always come & gone. This has lasted about a month now. I have noticed a drastic decline in my ability to do things I could do with ease just last year. & then I have a lot of the typical POTS symptoms (which I haven’t been diagnosed with either, still waiting on my primary care to review my neurology medical records to have a consult with Dr. Blitshteyn) tachycardia, fainting, brain fog, balance issues, etc. I have weird stomach issues, comstipation, bloating, often feels acid-y & full all the time. Lately, I’ve been just feeling like that feeling you get before you get the flu.  My oral temp is usually normal 97.8-99.5 but my body temp is usually like 103-104. I get super bad night sweats, like change your sheets the next morning night sweats .

when she did my exam, I moved all my joints perfectly without any pain that’s why I’m not sure if it’s joint pains or muscle/tendon pain. I do have a really high pain tolerance so for me, the pain is more of a nuisance but it’s scaring me because of how quickly it came on. I’ve had some of these aches & pains before but I can’t ever remember a time having them all at once. the heart stuff &headaches I’ve had for as long as I can remember. 

i don’t have any rashes. I did have this crazy rash two years ago that started on my left shin, the skin all peeled off like a sunburn & then it moved to my right leg then my right arm. I was just told to keep it out of the sun & put vitamin e on it. I had it for a year. I am & always have been sensitive to the sun ( I get sun poisoning several times in the summer every summer) but I don’t think I have any of the clinical symptoms of lupus. she also didn’t think I had lupus but said she wanted to test just in case.  she also said exactly what you did, she wasn’t going to offer treatment until all the results came back. she did say if these results come back with nothing, she will dig deeper. she was the medical director of rheumatology department at a teaching hospital here in buffalo. She’s young, only like 40something. 

but that’s about it, I think. 

do all of your doctors work together? 

i will probably take you up on the offer to DM you if I get a diagnosis, thank you so much. 

What is your sleep like?  I have chronic insomnia, non-restorative sleep, and hyper-arousal, where I wake up every 1-2 hours.  I basically wake up right during REM and therefore never get any actual sleep.  I have a rheumatologist appointment next week and am not really sure what to bring her --- except my laundry list of symptoms.  Some of them subsided but the big ones are gastroparesis, sleep disorder, pains in calves, minor fasciculations, heat intolerance and inability to perspire normally.  Hopefully you get the answers you need.  And eventually the treatment.  My PCP still thinks it's psychological and my neurologist gave up on me entirely.  Something is wrong in my system(s) and I just want answers and some relief if possible.  

Best,

Zer0

All good suggestions.  I'll look into all of that right away.  I still have a few appointments coming up plus switching my neurologist.  I am in the US and there are autonomic centers in Boston.  So trying to get to those places.  I know I don't have POTS but something is truly amiss.  I have a history of depression and anxiety but I just know it's not that.  If those caused all these symptoms --- I would get down on my hands and knees and thank Zeus, because then I know it could be managed with some degree of ease.  But this seems more nebulous; the symptoms less easy to merely pin on the mental.  My doctors are total incompetents.  They're lazy, ignorant., and even when presented with new information re: dysautonomia, they shrug their shoulders and defer to their own pathetic (in)expertise.  The most frustrating part is them not listening to me, the patient, as if their degrees make them gods incapable of hearing the audible cries from their lowly subjects (us).  Thanks for the suggestions though.  

Best,

Zer0

4 hours ago, Bluebonnet08 said:

Wow, that is a really rude reply by your doctor!  It's so frustrating to deal with that on top of an illness.  I think it would be a good idea to get a second opinion as well.  Have they checked for Sjorgen's Syndrome?

"PotsGirl" has a lot of information on her blog about Sjorgen's Syndrome and the testing for it.  From what I understand, the diagnosis can often be missed.

https://potsgrrl.blogspot.com/2011/09/what-is-sjogrens-syndrome-and-how-can.html

I have a rheumatologist appointment in 2 weeks.  My doctors thus far have said this is all in "the brain" and are leaving it up to my psychiatrists.  I can't understand why they won't even test me or consider my concerns.  They keep telling me my symptoms don't fit this or that disease.  I"m beside myself and at the point of giving up. 

5 hours ago, Shannoncr said:

i have a dumb question, would an ANA test help diagnose dysautonomia? 

My understanding is that it could help factor in a co-existing condition to it.  

3 hours ago, Clb75 said:

Your doctors seem to be saying you don’t have POTS or NCS. However, you could have other forms of dysautonomia like autonomic neuropathy without having Pots or NCS. A tilt table is typically for those, while there are other tests for your other symptoms. A rheumatologist would be a good place to go to rule in or out any symptoms and they could probably do the ANA there. A neurologist that has some understanding of autonomic disorders would also be helpful. Not all are experienced in autonomic disorders so you may need to check around. They could also look into the fasiculations. Can you go to a large teaching hospital in your area? They may have staff with wider experience in dysautonomia.

I know it’s frustrating, many of us have been in your shoes. It can take a while to get a proper diagnosis, and to overcome the ones who keep suggesting it’s psychological. Don’t give up, keep searching for answers!

Yeah.  I'm dumping the doctors who insist it's purely psychological.  They're absolutely wrong, I feel.  How is that they can run zero tests and come to that conclusion yet when I ask for tests they just smugly shake their heads and say "Nope.  Waste of time."  ?  It's absurd.  I'm going absolutely out of my d*** mind.  I've never been so enraged and beside myself.  No one is listening to me and no one will even look at the literature I bring them, to show to their own ignorant faces --- like pages from "The Dysautonomia Project."  They're so ignorant.  So very ignorant.  

Zer0

2 minutes ago, KiminOrlando said:

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.

I see.  Well.  I have a rheumatologist appointment in exactly 2 weeks.  I'm scheduling an end-around my PCP.  I can just log-in to my patient portal and schedule an appointment with another doctor for lab work.   So that's what I'm going to do.  Mine were on my hands and feet.  They originally thought it was hand, foot and mouth.  Then they thought it was syphilis.  I think I vaguely recall getting some on my chest and abdomen.  These doctors are so influenced by other factors --- especially their own biases --- that it's a wonder anyone ever gets healthy in their care.  I broke down in his office because I told him my life has been ruined and devastated by this.  He still tried to get me to focus ONLY on the psychological component.  They don't seem to get it: I"m psychologically defeated and disturbed because a.) my unexplained symptoms and b.) my lack of care by so-called care professionals.  

Thanks for your feedback.  

Zer0 

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?

3 minutes ago, MomtoGiuliana said:

I'm sorry the doctor is not taking your symptoms seriously.  Discouraging they would not do an ANA test. 

Did you have any symptoms during the test?  Were you having a better day on the day of the test?  It is possible to have variable symptoms and not be very symptomatic some days.

I'm not sure what those would be.  I answered 0 to all of their queries: "On a scale of 1-10, do you feel dizzy?" "On a scale of 1-10, do you feel nauseous?"  "One a scale of 1-10, do you feel on the verge of passing out?"  "On the scale of 1-10, do you feel flush, hot, etc?"  I forgot the last question, but it was basically the same, 0.  The only symptoms I had were the ones I've been having: gastroparesis, fasciculations (twitching), issues with perspiration, sleep disorder, etc.  But none of that is surely going to show up on a Tilt Table Test.  I have no issues with BP or HR.  I take it from time to time now and it's never out of bounds.  I took it last night and it was 72 sitting and 72 standing.  130/80 both times, basically. 

My question, though, is if the tilt table test itself can simply rule out dysautonomia ipso facto?  

Thank you for your concern.

Zer0

This has probably been answered before --- but I was at my PCP today, trying to get an ANA test, but was rebutted because they told me dysautonomia --- and my symptoms --- rule out whatever I was worried about.  How?  Because a normal tilt table test absolutely means I don't have dysautonomia (and that my constellation of symptoms don't necessarily point to any of the co-existing conditions).  Is this true?  Basically, his argument was: "The tilt table test can't prove what kind of dysautonomia you have but can rule it out entirely."  Again --- is this true?

Thanks in advance.  I'm beside myself.  I can't get these doctors to listen to me.  They keep telling me it's all in my head.  It's maddening.  

Zer0

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.

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.  

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.  

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

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.

I have no clue.  When I raise the issue of anything he keeps saying “the etiology doesn’t match.”  And they’ve done just basic blood work.  What do you suggest?  

Just curious if anyone had this:

Began as if I felt like I was developing the flu (but no fever, no nausea, just like I was coming down with something).  It was followed by pain in my groin, and excuse the graphic description, but pain going to the tip of my private.  (These pains lasted maybe 4-8 weeks have not returned).   There were diffuse pains as well, little ones in my toes or fingers, followed shortly by the inability to fall asleep until almost 3am; then heat intolerance shortly followed. 

I then developed these red spots on hands and feet for, again, 4-8 weeks, then followed by very dry hands and feet (and the spots are gone and most of the dryness).  There was also weird heading of sweat on my palms and backs of my fingers (which I also think has subsided a bit, though I still have difficulty perspiring).

I of course have had other symptoms but that’s how I recall it happening: with a non-flu “flu.”  Followed by seemingly erratic symptoms.  

Anyone have anything similar or know of what the impetus could’ve been?

My PCP swears it’s not autoimmune, Lyme, diabetes, or other known etiologies.  He is, as I’m sure you’ve all experienced, convinced it’s either anxiety or idiopathic at worst.

Thanks in advance.

Hope everyone is well.

Zer0

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.

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.

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.

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.

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.  

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

Can you explain what it feels like?  I've been told I have neuropathy but I was also just told my tilt table test was "normal" and don't have POTS.  I was having issues with my left hand about a month ago --- tingling and my index and thumb would shake a bit --- but took mirtazapine and it's gone.  My neuro said that was neuroapathy but I never had any pain per se in that hand, just the tingling and unsteady index finger.  

Hope you feel better.

Zer0 

*UPDATE* My tests came back and my neurologist doesn't seem to think I have POTS.  This doesn't mean I don't have dysautonomia but now I"m more confused than ever.  I was also having symptoms after the test so who knows. Did anyone else have a "normal" TTT and still wind up having POTS?  I mean...did I get this test too early?  

Hopefully you're right.  I've had so many new symptoms pop up that it's tough to tell what's getting better and what's simply the same.  The twitching in my arm and elsewhere is fairly new, for example (and extremely annoying).  I'll ask my neuro about that flourdicortisone.  Thanks again,

Zer0