All those weird Symptoms could have a name, Dysautonomia?

Often times when reading posts, there are members asking if anyone has this or that symptom. Though diagnosed w/ sarcoidosis since 2000, I have only recently been given a name that describes some of the weirder, harder to explain symptoms I have experienced. Some of these were easily dismissed because they are hard to detect or explain. The name?

Dysautonomia. This refers to the abnormal functioning of one's autonomic nervous system. While there are different syndromes, some are primary, some are secondary to another disease process. Mine is secondary, and caused by the sarcoidosis.

Symptoms which can point to Dysautonomia are many and can include the following. Irregular heart rate or rythms, Tachycardia, esophageal dysmotility(difficulty swallowing), urinary dysfunction(trouble initiating, abnormal voiding patterns/dysfunction),GI dysfunction(filling defects/gastroparesis, nausea, vomiting), panic attacks, blood pressure changes( likely upon standing), certain headaches, abnormal sweating, and sexual dysfunction. These are some if not all of the symptoms related to dysautonomia. If you have a collection of these symptoms it is possible that you have dysautonomia. Some of these problems can be attributed to other causes but are best left to a doctor to ascertain.

I currently take several medications for this syndrome:
1-Reglan (metoclopromide)-esophageal dysmotility
2-Toprol XR (metoprolol ER)tachycardia
3-Zofran (ondansetron)-nausea
4-Ativan (lorazepam)-anxiety/panic attacks
5-Lyrica (pregabalin)-nerve pain
6-Elavil(amitriptyline)-nerve pain/sleep aid
6-Miralax(polyethylene glycol)-constipation
7-Soma(carisoprodol)-headaches along occipital nerve blocks and Trigger Point Injections, aspirin(last resort)

The first sign of problems came around 1997 when I noticed a change in urinary function. Trouble initiating, frequency of urination, and abnormal flow pattern. Nausea and trouble swallowing have been problems for almost as long. Tachycardia showed up around 3 yrs ago. Panic attacks around a year later. Then finally headaches became a HUGE issue within the last year.

As you can see, it didnt all just show up one day. This led to a long list of doctors who dimissed and downplayed my symptoms. I finally found a great neurologist. After I explained everything in great detail she said, to my great relief, That isnt so hard to believe, I've seen it with several patients with sarcoidosis. This didnt mean I was cured or anything but it felt damn good to find a doctor who fully believed what I was going through and was willing to help. Hell, I didnt believe half of it myself and I've lived through it! Hard to believe but I was even dropped like a bad habit from one Sarcoidosis Clinic because I was a difficult case. I hope someone was able to gain something from this post. Best wishes my sarcoid friends.

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I forgot to add these helpful sites. This one is from the National Institutes of Health. Good stuff.
http://www.ncbi.nlm.nih.gov/books/NBK400/

Two other good sites-
Plain english questions and answers and list of common symptoms.....
http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Autonomic-Dysfun ction-FAQ?hp_id=181

Symptomatic treatment of dysautonomia, lots of medications listed, many pros, many cons(side effects)......http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Tre atments?hp_id=171

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That's interesting. Did your neurologist explain the mechanics of how sarcoidosis caused these? As it's quite an association to make, particularly listing all of those symptoms, but we're not told exactly how one thing lead to another. Did the neurologist elaborate on that to a sufficient extent, i.e., not just as to how dysautonomia occurs in general, but how exactly it was caused by sarcoidosis in this particular case? What were the tests and test results that let him conclude that and what was the basis for interpretation? Thanks.

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Quite an association? Its not as far fetched as you might think. In the 3 yrs I have been a member here I have spoken to several members who have had this problem. These problems are not necessarily neuro related. Some can easily be explained by physical sarcoidosis involvement or some other issue/disorder. But, if you have been a long period of time without finding the cause a neurology workup might be in order. If you look at some of my journal entries others talk about this issue.

How one thing led to another? How does someone w/ primary pulmonary sardoid turn up w/ sarcoid in their spleen or liver or any other area? How do you explain that? How would you explain how one thing leads to another? If youhave systemic involvement it could show up anywhere in the body. Your guess is as good as mine. So no she didnt explain all the "mechanics". She did say that even extremely small granulomas that could escape discovery could be causing these symptoms and we'd never see them. They could be pressing on nerves and causing pain etc. I was diagnosed w/ systemic sarcoidosis in 2000. In my case the neuro doc went through my 2 foot stack of test results for the last 13-14 yrs. Abnormal flow rates from urology doctor showing urinary dysfunction despite no physical abnormalities. I had exceedingly high heart rate for a good while w/out explanation from echocardiogram or MRI. Colonoscopy's, small bowel follow throughs and CTs(showing filling defects) despite no physcial reasons, esophageal studies pointed toward esophageal dysfunction(why I couldnt swallow) no physical restrictions such as narowing, CTs, MRIs, etc. I had EMG tests which were extremely painful. Most of these tests were done multiple times over the years. I kept having abnormal function tests despite no physical explanation. I think this is the key to doctors leaning toward looking at autonomic issues which can differ quite a bit with neurosarcoidosis which can sometimes though not always be seen w/ spine or head sarcoid involvement. She basically had me scheduled to do a QSART test and one other I can't remember but she said there was no reason to make me suffer though any more tests as I fit the profile to a T. One other thing I failed to mention is my issues were clouded by my diagnosis w/ another autoimmune disease in Oct '09. Positive ANA and anti-RNP antibodies showed I had Mixed Connective tissue disease which has symptoms like and is similar to other CTDs such as lupus, scleroderma, and rhuematoid arthritis. Since I had dysfunction in different systems(Urology and GI) prior to problems with MCTD it was concluded that sarcoid was the culprit though some patients with MCTD aslo have problems with esophageal dysfunction. Either way it is a syndrome secondary to autoimmune disease so it is a little different then going in w/ no disease history and trying to diagnose a primary case of dysautonomia. Since I am not a doctor or in any way involved with the health care system, this is about he best I can do w/ explaining as it is still a little cloudy to me even. Google dysautonomia and secondary dysautonomia and then take any questions you have to your doctor.

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I have dysautonomia as well. Also known as autonomic neuropathy. Mine is caused by sarcoidosis. I had a small fiber neuropathy biopsy done on my legs then additional testing as well at the Cleveland Clinic. I take IVIG every 3 weeks to help with the symptoms but I still have them just not as bad. The IVIG did help alot with the irregular heartbeat but I still have a hard time urinating some days and then other days I urinate over the moon. My blood pressure is always extremely low. I have never really sweated correctly and that was one of my first clues. I hate Sarcoidosis it has affected my life in a very negative way and continues to do so. Some days are harder than others. I just try to keep active and go on about my life but sometimes it gets old. Good luck and I hope you are able to continue to live a somewhat normal life with the symptoms. I know it is hard.

Take care and God Bless:)
Andrea

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I, too, have nearly all of these symptoms. It's good to know they can be explained! I just had an appt. with my Neurologist the other day. She frustrates me to no end! Whenever I suggest it is the Sarcoid causing how I'm feeling, she keeps saying to me, "Stop saying Sarcoid! It's not Sarcoid doing this to you." YET -- she doesn't have any other reason why I'm having these issues. Oh come on!! Recently I developed numbness and tingling all over my body in a matter of 3 weeks (including my face). Well, as it turns out, I have been on Lisinopril (an ACE inhibitor) since after my recent heart failure episode and it can have a side effect of Parasthesia which is a tingling sensation. So, my primary care doc told me to stop taking it. The tingling has improved, but it is still there some. My Neurologist sees nothing in my MRI to indicate a cause. I'm also very cold from the waist down and very hot from the waist up to the point where I sweat profusely more often than not. It's like I'm two different people. She even commented at the difference. So, she's doing an EMG next month to analyze my ulnar nerves to see why I'm waking up with numb hands in the morning. When I see her again I'm going to propose that dysautonomia is what is wrong with me and see what she says. If I continue to not be happy with her I may just find me another Neurologist.

Thank you,coonhound, for giving us this information! It is very interesting and good to know that we are not crazy for having all of these random symptoms.

Blessings,

Jen

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Thanks coonhound. I think it's good to be able to give things a name, to think of the associations, to think that one understands. I think it's good to have a concept of things, to be reassured that it's not us vs. the unknown, that it's rather us vs. X or vs. Y, with a name, better defined. I think it's a pity when the specialists we deal with won't share information with us and fail to explain how they arrive at a certain conclusion. Or when they omit saying with which degree of certainty they pronounce themselves for something or other, or give an honest assessment of their own degree of knowledge or specialization. Personally I am always eager to understand, in particular the causation part. As far as I'm concerned a specialist who agrees with me but does not share his train of thought is not better than one who doesn't agree with me and does not share either. As I'm not just after the end result (the diagnosis), but after a description of the cause and effect. Particularly if it's something that affects me to the extent that sarcoidosis and dysautonomia may affect someone, quite profoundly. Of course if someone agrees with me and that leads to a treatment and the treatment does me good, I'd appreciate that, however, I'd rather be explained things and not just dismissed and sent home and be left to wonder, as some doctors sometimes do. I know that not all doctors have time to educate their patients, but in many cases at least giving a few leads and a little more communication could go a long way to help our minds be comforted not just our bodies; otherwise one gets to the point that the only place one can get unlimited leads from is the internet. Unfortunately that has its shortcomings. I think it's very good to be inquisitive and to share and I thank you for that too.

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Hi Andrea/PurpleSnowFlake. Its great to see you posting. I haven't seen you around in quite some time. Maybe I just missed ya. You were indeed one of the members I was referring to when I mentioned speaking about this problem in the past. Its cool you would just pop up like that! I remember when you said I might have this problem after I was mentioning one of the things that scared me to no end, my body had started the jerking. I thought dyautonomia was a little far fetched but a possiblity, a couple yrs later w/ more symptoms Im convinced. I was literally one doctor appt away from going to Cleveland myself when I found this neuro doctor@ Baptist Hospital. I am glad that CC have been able to help you out somewhat w/ the IVIG. Yeah the urinary stuff sucks but knock on wood I haven't had to be cathereterized in quite some time now, maybe I shouldn't have jinxed myself, oh well. None of my doctors have mentioned the IVIG but Remicade has been thrown around. I am just as scared of infections as the sarcoid/dysautonomia so I have deferred up til now on anything more than pred and plaquenil.

I do have one rather important question for you. Have you had any issues w/ breathing related to the dysautonomia. I stopped breathing a few yrs ago and probably shouldn't still be around. With out my mothers watchful eye I surely wouldnt be. Lucky for me I was visiting them at the time and the rused me to Hospital in the nick of time as I was not able to inhale the least bit of air. This was the worst fear I have ever experienced.
I had bronchitis real bad but it seemed more than that. Lately I have been having a real tough time w/ respiratory issues during the last year. Infiltration was found on CT, yet again it seems the symptoms of SOB and sputum are just overwhelming sometimes, as I sit here typing while during my nebs. Just wondering if the doctors are missing something, as always.

If you dont feel like talking about these on the post, it is a public post(I wanted to get the word out), thats ok. Just message me. Have a happy, safe, and pain free Christmas.

*In case you dont remember Coonhound, I used to post as Kristopher/kmb but changed as I used coonhound on other sites so keepin it simple.

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Hi Jen. It sounds to me like its time to find a new neurologist. No reason to keep beating your head against a wall when you know it wont help. The neurologist I had before this one was a major loser. He told me of a urologist to see and how he had seen this in other sarcoid patients. When he did not send my records to my rheumatologist I got them myself, NONE of this was mentioned. Furthermore when I looked through the reports it said I had refused to take my EMG test. I really didnt, I went as far as I could when the pain got to be so bad as to bring tears I told the lady nurse conducting the test I couldnt go on. I dropped this hole like a bad habit. (I wont go into it anymore but if you want I share about my crazy experience w/ this guy in my journal).

The way I look at it is this. We dont bring our cars back to some mechanic who has not fixed the problem or who was dishonest. Our bodies are way more important/precious why would we keep going back to someone who doesnt help us. We pay them so they work for us. Ditch this loser and get some help. Maybe you could make a post telling where you are located and if anyone here has been to a good neurologist in your area. I am so sorry you have been dismissed and your problems downplayed. It hurts to finally get a diagnosis of sarcoid then have every doctor tells you it doesnt cause all the problems you are having, jeez!. Put finding a new doctor as your new year resolution. Best wishes to you Jen and have a nice Christmas.

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You are welcome. Kind of felt that I had to. If it wasnt for others(like PurpleSnowFlake) who shared their experiences with this problem I would never have seen the light. Have a nice Christmas.

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I agree 100% with you on how doctors should be with their patients. When you say that they dont have the time, they need to take the time. They have no qualms about us waiting in their waiting rooms forever or charging us more than we make in a month for a test. This is one thing that blew me away about my current neurologist. She just kept sitting there answering questions and expaining things to me. It got to a point where I was excusing myself for asking just one more question. There was NO rush on her part to get me out of there. Unbelievable. I think they are out there, it just might take a couple of years to assemble a good team. I feel I've got one now and dont want to let go of any of them despite the fact that we moved and I am now 60miles away. Call me crazy but I think I would be out of my gourd to set out assembling a new one as the process is like pulling teeth and not nearly as pleasant. So I will drive or get a ride, makes sense to me. Good luck w/ finding the keeper doctors and have a great Christmas.

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I too have autonomic neuropathy and that is how my neuro sarcoidosis started. Mayo clinic did specialized testing and found it. IVIG helps a lot with mine. This is what made me aware I had some sort of disease going on. I had a syncopal convulsion. I had run a mile and a half, passed out and convulsed. They did not think I had seizure problems it was all related to my HR and BP.

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Sorry you haven't missed my post I just haven't been posting as much. I guess I really should give an update now and then:) I haven't had any breathing issues wit the Sarc or autonomic neuropathy but as you may or may not know I have never really had much problems with the Sarc in my lungs at all. My Sarc just likes to invade every other crazy nook and cranny in my body. I hope that doesn't happen to you again and I am thankful to hear that your mother was around. Knock on wood I haven't had to be catherized either in quite a while but truthfully that was one of my first clues that I had Sarcoid and no one caught on until years later. I wish you luck and I will try to post an update soon about how I am doing. A lot has changed with me and I need to share.

Merry Christmas and God Bless all my Sarkie friends:)
Andrea!!(PurpleSnowflake)

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I've lost all confidence in drs. They don't know anything and are just using people as guinea pigs because they don't have a clue.My last blood work, I found out that my Vit. D was bottomed out with no calcium in my body. I did learn that Vit D helps build up the immune system to fight off stuff like sarcoid, colds, viral infections etc. So I realize if my Vit D was at an all time low, now taking 50,000 IU of D a week (prescription) then my immune system didn't stand a chance of fighting anything. I do now that the last flare up wasn't nearly as bad. Absolutely no neurological, no numbness, no memory loss and I finally think by doing my own brainstorming off different websites that it's just a matter of time and I'll be done with this. Of course I did leave it in the Great Physcians precious Hands and was led by Him. I leaned totally on His precious Holy Spirit to lead and guide me into all truth. So I began digging. He speaks in His Word how we always run to natural physcians first instead of the ones who fearfully and wonderfully made these bodies. Let me tell you, that got my attention, so I changed things up a little bit with wonderful results. He gifts the drs. we have here on earth but as the Bible says....we see thru a dark glass dimly (we only see so much), but He on the other hand sees the whole picture. Call me a fool, but I believe Him over any doc anyday....By the way, I'm off all pain meds, going off all prednisone, anti depressants because He's got a job to do for me and I'm gonna be ready for the task as He leads.
I'm not saying this is for everyone but only for those who truely believe. I had to check my heart first to realize if I really believed or not.....I realized maybe not enough for my total healing.....then I chewed and meditated some more.....and I'm now a constant , humble believer. Call on Him, get in His Word on the healing scriptures and promises to us. Don't let them out of your site for even a moment! He'll be right there the whole time! Sickness isn't of Him, it's of the prince of darkness who wants to kill us all.

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mercy05: I hope you're well monitored to avoid Vit D toxicity.
http://www.vitamindcouncil.org/about-vitamin-d/what-is-vitamin-d/vitamin-d- toxicity/
I personally would have hesitated to take Vit D supplements if I was a confirmed Sarc, but every case is different.

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Hi mercy. I know how difficult finding an understanding doctor can be. I believe doctors don't want to commit to a diagnosis or treatments because they dont want to take responsibility in case they are wrong or the patient gets worse despite treatments which is possible. Or they dont believe sarcoidosis is much to get bothered about because they don't see sarcoidosis patients and rely on old information and percentages.

Though not every patient , many sarcoid have trouble with VitD and calcium dysregulation. It is very important that you make sure you have all tests for these before starting VitD supplements. Not all sarcoid patients have Vit D dysregulation, but if you are one of the ones who do, the consequences of taking massive doses of VitD supplements could land you in hospital or worse. Most doctors only check for calcidiol. They do not know to test for calcitriol which is much more important in sarcoid patients because it is the active form of VitD in the body and is produced by granulomas.. If calcitriol is high, tests may show calcidiol is low. When my sarcoidosis returned after a 5 year remission, the first thing that came up showing its activity was VitD dysregulation- very low calcidiol and a calcitriol was around 90. This wasn't bad enough to land me in Hospital but it did cause nausea and kidney stones. Usually Plaquenil or prednisone can help reverse this trend.

Please search the site for more information on how VitD can affect those with sarcoidosis. Priscurl also has some great posts on this matter. If you need help finding a doctor knowledgible about sarcoid I believe there is a Cleveland Clinic located in Florida(looked@ your profile saw you live in FL) as well as in Ohio. There is also a physicians directory you can look at here from FSR. If these are no help you might want to post about this and list where you are from and hopefully you will get some replies from members here.

FSR doctor search....http://www.stopsarcoidosis.org/patientresources/findspecialist.htm

Have a nice Christmas.

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