Autonomic Neuropathy Treatment
 

I live in England and I am struggling to navigate my way around the health system, particularly as my AN diagnosis is relatively new and I am still unsure of what implications it has for me.

Those involved in my care have been blaming my symptoms on my Rheumatoid Arthritis which was diagnosed in 2009. The symptoms; shortness of breath, rapid pulse, orthostatic hypotension and heart murmur. My rheum suspected Rheumatoid associated cardiovascular disease. In August 2014, I underwent a barrage of tests to be told that they couldn't find the cause. My lung function is on the low side of normal and they want to re-check again soon but nothing serious showed up. However, at the same time, my gastroenterologist did some tests and found I have autonomic neuropathy as the cause of gastroparesis.

Late last year, I started fainting and semi-blacking out. My GP and rheum are both aware that my blood pressure drops upon standing and my heart rate rises but don't seem to be much help. I've been told to eat more salt (I have slightly low sodium levels, probably from vomiting so much) and to drink more water. I am a bit :confused: because this is having a real impact on my life and they keep shrugging at me. I work full-time and twice in recent weeks, I have blacked out completed and hit my forehead. Both times resulted in obvious bruising to my face. To be fair, the last GP I saw did ask me to come back and get a cardiologist referral but I'm wondering if I should ask to be referred to a neurologist who specialises in autonomic dysfunction. I doubt I'll get an NHS referral but I have private health insurance, so I am lucky that I can access good health care. I just need to figure out who's the best person to see; cardio or neuro. I should add that I am quite private and don't cope very well with being poked and prodded unnecessarily, as it makes me anxious.

Thanks in advance for reading this.

Wow! I certainly hope someone helps you soon, before you give yourself a concussion or worse, break a hip, etc during one of your falls/black outs.

Autonomic neuropathy can be treated by either cardio or neuro, but not all of either specialty are well versed in this condition, so you have to inquire about their training in the area. There are neuro who specialize in autonomic neuropathy, but they are few and far between...and probably even more so in the UK. Cardio's are sometimes better since the condition directly effects cardiac function.

There are several medications to help increase your BP when you stand...Florinef and Midodrine are two most common ones. Florinef is a steroid based medication to help your body retain fluid and therefore keep your BP that way. Midodrine is a vaso-constrictor that helps constrict blood vessels to push blood back up....that tends to pool in the feet in this condition.

Increased salt is always good, as is water, but it sounds as if you need MORE help then these two provide. Please contact one of your doctors and ask for more help before you really get hurt during one of these episodes. Also, I'm sure by now, you likely recognize that 'feeling' you get as your BP starts to drop. You need to immediately sit down when this starts...no matter where you are at the time. The faster you get down, the faster your BP will stabilize. Sometimes you have to get your feet above your heart, but sitting or laying down will at least keep you from passing out.

BTW, there are also medications available for the gastroparesis. In the UK, Domperidone is widely available and very helpful for this condition. Also eat small meals, walk after eating (so gravity and movement can help empty your stomach), and don't eat after 5-6 pm to avoid night-time symptoms. Sleeping with your head elevated may help too. Also avoid harder to digest foods like raw fruits and veggies (cooked/steamed is ok), nuts, etc.

So talk to your doctor about their experience with this condition...to find out which would be better able to manage your care. If neither has much experience, then request/search for another doctor that can help.

Hi Starburst,

As soon as I began reading your story, I thought a ha! dysautonomia (autonomic neuropathy). Mine came on with a barrage of symptoms last April. I also have sensory neuropathy which began a bit later. Here is my letter with perhaps TMI but I think adequate caution. I was hit with dysautonomia last April.

Some of my symptoms have spontaneously improved, such as the gasttoparesis, which only lasted a few months (although I do have severe GERD for the first time in my life). I'm very heat intolerant, have very dry eyes, mouth and hair (lost a lot of it...sad), and also have severe insomnia.

By far, my worst symptom is fatigue, which may be due to severe orthostatic intolerance (OI). The first two neurologists I went to did not even test me for this (I was formally diagnosed with small fiber biopsies). I didn't understand why I became basically bedridden with profound fatigue.

The national dysautonomia specialist I paid a fortune for basically mumbled it was just a part of the problem. No treatment proposed except as much exercise as I can stand. I began baby yoga with a trainer (I had always been very athletic....until I wound up breathless, sweating, and sleepless in bed for months.) I was already on a work leave.....for I had a neurological reaction to medication...more like Parkinsons, in the early fall, 2014. Long story. I was much recovered when the dysautonomia hit. Went from sick leave to disability with the new diagnosis.

I finally hauled myself off to a cardiologist whose name I found just last month. He did a tilt table test...and my (high) blood pressure fell from 140/90 to 80/60 in a few minutes...they had to stop the test. I also have an accelerated heart rate with the tilt (POTS). Lots more gory details.... This is why I have such trouble sitting and standing.

I'm a mess....but here is the reason for my post. I do not yet have any sort of treatment plan and I have yet to find a doc to give me one.

The cardiologist put me on a beta blocker, Propanalol, which is helpful. I can't take standard meds for OI because they are designed for people with low blood pressure. I am gradually increasing exercise, but I'm still basically bedbound.

I went back to the dysautonomia expert last week, and he was again useless (though good for my disability paper trail). I now have a really expensive appointment at a dysautonomia center at NYU here in NYC. I've tried to talk with someone there with medical expertise yesterday to see if it is worth my while, but I'm told I have to email my questions. I will do this Monday. I have identified two new neurologists and hope to speak with them to choose one....one is also at NYU.

I'm just looking for an empathetic clinician who will spend some time with me. I like the cardiologist, but he is frantic and overbooked. Nice, nice guy with little time....and yet not up on the latest terminology and treatment. I did have a thorough cardiovascular workup with him...I'm basically OK except for the OI and POTS. Of course, he can't address my sensory neuropathy. ...which is worsening.

I also saw a rheumatologist to rule out an underlying autoimmune condition. I saw an ophthalmologist for dry eye and learned I have some visible small fiber nerve damage. I'm going to investigate whether I have Mast Cell Activation Syndrome (I started a long thread here about this recently), for all my troubles began with an anaphylactic reaction to meds.

What a depressing response to you Starburst, but I felt I had to tell my story because dysautonomia is notoriously difficult to identify and treat. I just feel determined to find a great neurologist....I think this is key. Fame is not a criterion, I learned. My doing research is so important....why I'm phoning all potential docs. I basically figured out I had dysautonomia last spring and my first neurologist just denied it until the biopsies came back. **

So all I can say is do your best to do the necessary research (including possibly useless appointments) to find someone good. ** I found my expert this way, and he was a washout. So try to talk to someone in the office. Obviously, this is a time-consuming and possibly expensive quest. I have read about people getting their lives back with the right doc though! Keeps me going.
**it is also worthwhile to use the key word "dysautonomia," as you search, for I think most folks here do not have autonomic neuropathy. I'm now looking at neurolgists' qualifications throughout every medical center in NYC....and phoning!

Best of luck, and don't hesitate to PM me if you have more questions or insight!

Sylvie

Sounds like you both could use a good doctor to manage your care. My best suggestion would be to look at teaching hospitals.

Starburst,

I'm sure this may be more problematic for you on the NHS, but maybe you could explore option through private pay funds they give you (I have no idea how this works but have heard others talk about it) and then once you find one, then maybe it's possible to see him/her again through the NHS. Is this even possible?? Like I said, I'm not sure how this all works but hope it's an option for you...as teaching hospitals are usually the best place to find unusual specialists, that aren't widely available.

Sylvie,

I'm curious about your ophthalmologist saying that there is 'visible' SFN as a result of your dry eye exam. Can you provide more details about this...I'm not sure i understand. BTW, have you had a skin biopsy for SFN?

I don't understand how or why these doctors you see are dismissing treatment of your obvious severe state of your condition. What are they saying is the reason they can't help you? I certainly hope you have better luck at NYU. Glenn (a regular poster here and expert in neuropathy) speaks highly of NYU, so I'm optimistic you'll have good results.

And just so everyone interested in autonomic dysfunction knows: Dysautonomia and Autonomic Neuropathy are the same thing, so searching either will direct you to similar or the same sites. Most sites (like Wiki, Mayo, etc) will use the names interchangeably...or other names, such as autonomic dysfunction, dysautonomic neuropathy, etc.

Dysautonomia is technically 'dys'function of the autonomic nervous system. Neuropathy is a disease or dysfunction of one or more peripheral nerves and autonomic neuropathy is therefore the disease or dysfunction of the nerves involved in the autonomic system...which is a subset of the peripheral nervous system.

All the same nasty condition that can turn our lives upside down. But the upside is there IS treatment available, but it just requires the right doctor. I wish you both success in finding that doctor.

Starburst and SylvieM, you might consider testing for Autoimmune dysautonomia/autoimmune autonomic ganglionopathy. If you got it you can get immunological treatments (IVIG, Rituximab, etc.) that might help to improve the damage and not just to alleviate the symptoms (Florinef, Midodrine, etc. ).

There is a great lecture about it here:
http://www.mayomedicallaboratories.c...12/07-autodys/

The main test for this dysautonomia is the ganglionic acetylcholine receptor Ab. It can be tested in Mayo's and Oxford's labs. Mayo is doing it only as a part of some expensive panels, so it is much cheaper in Oxford's Labs.
The test in Mayo lab: http://www.mayomedicallaboratories.c...rpretive/89904
And in Oxford lab: http://www.ouh.nhs.uk/immunology/dia...ntibodies.aspx

Starburst, regarding the question whether to go to a cardiologist or a neurologist, I agree with en_bloc that it is important to inquire about a doctor who specialize in dysatutonomia. It doesn't have to be a neuro or a cardio, I was diagnosed and treated for POTS by internists who specialize in dysautonomia, fainting or blood pressure.

There is a lot of info about dysautonomia in this blog:
http://potsgrrl.blogspot.co.il/
it is mainly about POTS, but most of the tests and treatments for POTS are the same as for orthostatic intolearnce.

Sylvie,

I'm curious about your ophthalmologist saying that there is 'visible' SFN as a result of your dry eye exam. Can you provide more details about this...I'm not sure i understand. BTW, have you had a skin biopsy for SFN?
________

Yes, I've had a positive biopsy (ankle and thigh)....11/15.

Apparently the ophthalmologist said he could see some nerve damage as he was looking into my eyes. I didn't question him.....is this odd or unlikely?

As for the lack of explanation for treatment. ...I don't get it either. This is why I'm trying so hard to find a more dedicated clinician.

Thanks so much for your continued concern and suggestions. ...En Bloc and Still Hoping ...it means the world to me to have such good advice from people who understand and who have far more knowledge and experience than I do. I'll follow up on your testing advice, Still Hoping, when I write to NYU tomorrow.

I also appreciate the more nuanced definitions of dysautonomia etc. It's interesting to me that some forums and sites don't use the terms "dysautonomia" and "autonomic neuropathy" interchangeably. I just wanted to put this out there so that Starburst and others may search more effectively.

Thanks so much again. From what I've read on other sites, my prolonged search for a comprehensive and effective treatment is not unusual with this odd illness, which is what I've tried to convey to Starburst. Yet, my meetings with a recognized authority are particularly frustrating....and it's difficult to be a strong advocate for myself when I feel so damn compromised....

Sylvie

It is possible--
 

--to see nerve damage to the optic nerve disc (head) on a good opthamologic exam, though the optic nerve is actually myelinated with the same myelin as the spinal cord, and therefore usually considered part of the central nervous system rather than the peripheral one, and certainly not a small fiber type nerve.

Generally when such damage is seen, it involves a "washing out" or "pale" optic nerve appearance, which generally means damage to the myelin, though there can be axonal damage as well.

Less profound optic nerve damage may be asymptomatic, but if it is extensive usually there are associated visual disturbances. The most common types of optic neuropathy/paleness in the Western world, especially among older people, are associated with diabetes, in which the mechanism is primarily ischemic/circulatory, and glaucoma, in which the mechanism is primarily compressive due to fluid build up. But potential causes are as wide ranging as the causes of other neuropathies. In particular, in younger patients, autoimmune, toxic, and nutritional deficiencies should be investigated.

Thank you all for your helpful replies. I've been recommended a specialist who is apparently the top man for autonomic issues in Europe. I'm not even going to ask for an NHS referral but will pay for this to speed things up. I'm only 27 but only living part of a life when I feel there could be so much more.

en bloc It's not always to easy to get your voice heard in the NHS but I know I need to push a bit. I've been loathe to explore things too much as I'm worried it will impact on my job for which I need to be able to drive. I'm on medication for the Gastroparesis. I already take domperidone as well as a couple of other anti-emetics which help to varying degrees.

SylvieM Thanks for sharing your story. You've certainly faced some challenges. I appreciate you outlining the names/diagnoses. My gastro referred to it as a sensorimotor disorder in one letter!

stillHoping The gastro prof strongly believes that if we treat the underlying cause (my autoimmune disease) then my symptoms will settle. There is certainly a link between when my inflammation levels are high and when my vomiting and fainting are worse. Thanks for the article and info. I will sit down when I'm less tired and have a proper read.

This interests me very much because my SFN appears to be progressing from numbness and tingle in my gums, lips and lower nose, up into my eyes. I don't know a lot about this apart from that optic neuritis is most commonly found in MS sufferers and is one of the diagnostic criteria I believe. I was found to have a flame haemorrhage close to my optic nerve by my last opthamologist. He explained that he found it a surprising discovery given that I don't have diabetes. He wrote to my GP suggesting that I was more closely monitored for hypertension. I was on oral steroids still at the time.

I see a new opthamologist next week and have passed on the image the last chap emailed to me. No one has commented on this flame haemorrhage or made any connection to my SFN but I am now on two BP meds. My vision isn't doubled or overly blurry but I do have trouble navigating if flooring is decorative or steps not very clearly defined and have to take all slopes in pigeon steps clutching a cane and where possible, walls and hand rails- and often misjudge doorways and feel very disorientated when lighting is low or if it changes. I have wondered if some of this might be visual because my eyes feel terribly tight and inflexible these days - I blink constantly and tear break up tests show significant lack of tears.

Sorry if these questions reduce the high minded discussion and information being shared here out of Starburst's post - but I'm also interested in learning how/ whether Dysautonomia is the same thing as Autonomic Neuropathy and to learn whether PoTS is always responsible? I am non-scientifically minded so am struggling to work all how much of this information and advice applies to myself. I don't have access to the caliber of expertise that some of you are seeking or are already benefiting from because of lack of funds and my Scottish location. However I am moving close by to one of the largest teaching hospitals in Europe very soon and the more I can understand about the distinctions between sensory polyneuropathy, autonomic neuropathy, dysautonomia and PoTS - if they are indeed distinct - the better.

Hi Mat,

Just to clarify terms. Dysautonomia is an umbrella term used to describe a deregulation of the autonomic nervous system. There are many condtions and diseases that can be placed under it... autonomic neuropathy, POTS, neurocardiogenic syncope, and more serious illnesses like Multiple Systems Atrophy. If you Google "dysautonomia" you can find several websites that explain this in detail. Wikipedia is also a good start.

You can tell from this site relatively few posters who are suffering from "sensory" small fiber neupathy...like most of the painful spreading symptoms you describe in your post.... also have autonomic neuropathy.....yet the potential is there...for small nerve fibers are involved in both. I also read on a dysautonomia website that only about 3 percent of people with POTS have sensory neuropathy.

I have both...I began with dysautonomic symptoms and so far I find them far more disabling....but like you, I worry about the sensory spread. I'm sure others will weigh in here....for I'm a bit confused about how it appears most people with sensory SFN don't go on to develop dysautonomia.

I hope you move opens a door for much better treatment for you!.

Sylvie

Sylvie thank-you very much for explaining. It has taken me five long years to learn a certain amount about RA and connective tissue diseases. Now most of my symptoms appear to be neurological so I'm having to slowly acquire more knowledge about the workings of the brain and the nervous system. I know a little already about SFN and the diseases that can trigger it. But I didn't realise that dysautonomia is less commonly a problem for those with SFN - I assumed the two were interrelated. I'm increasingly convinced that I have the more neurological MS-like type of Sjogrens but getting diagnosis/ help/treatment for this will not be easy I suspect. Certainly my present and previous rheumatologists haven't seemed to get beyond my negative/equivocal autoantibodies and history of non erosive RA.

I do have paired oligloclonal bands which seem significant to me but not to the previous neurologist or present rheumatologist so I'm hoping that the new hospital will serve me better re rare autoimmune diseases. Sorry you too are falling into the 3% with both types of neuropathy. Have you tried oral steroids at all and if so did they help with the autonomic symptoms at all? The did help me a great deal but all my specialist focuses on is whether my joints are inflammed or not.

Take care and thanks again for your help, Mat

PS Mat,

I understand why you are particularly concerned with your ophthalmologic symptoms. ..as far as I know, only the dry eye is a symptom of dysautonomia. ...although, as I've written, I apparently have some sort of nerve damage too.

I'm so glad you are seeing someone, and let us know how it turns out.

S

Hi Mat,

Thank you for your lovely letter and your concern.

So far I have not tested positive for an underlying autoimmune disorder. This is both bad and good news....for I know, as in your case, having one such disorder may reflect the possibility of another. However, an underlying autoimmune condition may be treated, and I'm in contact now with someone on this site who is beginning to respond well to infusions. As I mentioned, although it takes forever, I am still searching for a more definitive diagnosis that may lead to effective treatment.

Because i have no defined underlying disorder, I've not been offered steriods. I'm not eager for them......I'm afraid of their side effects. I'm merely on a low dose of nortripyline for pain, and propanalol for my orthostatic intolerance and POTS. Very little help....so far. You may know the feeling,....I'm not sure, of a rapid, unexpected onset of chronic illness......still navigating all of those grief stages (except denial....that didn't last long...but I sort of wish it did!)

Oh, just to clarify....I really don't know the stats on concurrent sensory and autonomic neuropathy. ..the 3 percent datum dealt only with POTS patients...who tend to be young women. I've found very little so far on coexistence.... perhaps it deserves a thread here....I'd love to see more explanations for this....both in terms of personal stories and research.

Thanks again for your post!

Sylvie

Actually, there are several vision symptoms from dysautonomia/autonomic neuropathy. They include simply blurry vision, diplopia (double vision), tunnel vision, dry eye, and difficulty with pupils changing light conditions (making night vision more difficult). There may even be more related vision problems.

Mat, you should ask the ophthalmologist about this and whether any of your problems might be related. I really wouldn't be surprised if they were.

And--
 

--among people who suffer from sensory small fiber neuropathy, autonomic symptoms are probably more common that is realized, although often the symptoms are mild or "subclinical".

The most common autonomic symptoms that are reported are hypo or hyperhydrosis--disorders of sweating (and one of the most commonly used tests for autonomic small fiber involvement is the "sweat test"--sudomotor axon reflex testing), but there are a decent number who report some degree of orthostatic hypotension (blood pressure reduction on quick standing), and some even report problems with gastric emptying/motility/constipation.

Of course, gastric dysregulation is common in diabetes, in which the first nerves typically damaged are the small fiber ones; diabetic autonomic neuropathy is recognized as a specific clinical entity.

See:


http://neuromuscular.wustl.edu/autonomic.html

http://neuromuscular.wustl.edu/senso...tml#idiopathic

http://neuromuscular.wustl.edu/sensory-small.html

I agree on all points.

And although there are MANY causes of PN, Diabetic neuropathy and diabetic autonomic neuropathy are the most common causes of peripheral neuropathy.

We don't often use the term dysautonomia in the UK which is where Mat and I are both from. It tends to be referred to as autonomic dysfunction or autonomic disorder or autonomic neuropathy, if there is confirmed nerve damage.

Interestingly, yesterday I received cervical spine MRI results that show multiple herniated discs with nerve root impingements. The neck is moving out of the natural C shape into a straightened line. Also, there is a herniation at the bottom of my skills which may or may not be linked to my spina bifida meningocele. Given that we know my vagus nerve is damaged, I wonder if there's a link to my neck issues? I'm seeing my wonderful gastoparesis specialist in a fortnight and I have questions!

This is why it's best to clarify that several terms mean the same thing. I actually try to use more then one term when posting here (sometimes even within the same post) so that others will know what I'm talking about, in case they are used to other terms.

If you look up Dysautonomia on Wiki, it says "(or Autonomic neuropathy)"...as some other sites do the same. If you search autonomic neuropathy, the dysautonomia for Wiki appears. Different areas...and even different doctors use various terms, all meaning the same condition. Of course, there are subsets of this condition (Pure Autonomic failure, etc) that are separate problems.

SylvieM,

I didn't know where to put this post so I'll start here.

I just finished some of my workup. So far no autonomic anything. Just had SFN biopsies this week.
Creepy crawly burning, freezing all over. Freezing up and down spine..comes and goes. Hot water sensations drip down my left thigh. Left foot and leg burn, ache but only when I'm up and about or if it is dependent. Hand, feet and nose freeze...all my life. Restless Leg issues on/off...mostly never now that I discovered magnesium. Bilateral Meniere's disease (20+ yrs), GAD with panic attack, severe depression, 2 back injuries, degeneration of c-spine but I'm in my 40s, macrocytosis, erythromalalgia (on/off 6 yrs finally got a diagnosis), ?? Raynauds, IBS-C (all my life), ovarian cysts, fibroid uterine tumors, SICCA Syndrome..just diagnosed (at least 6 yrs with that)...Lyrica started. Brain shocks...those started in 2014 and still persist. If I leave my home, I just suffer from freezing and anxiety. I can tolerate nothing. Can't hardly even watch the news anymore. Exercise decreased to Pilates and swimming, was told to gain weight..I was very active/athletic so this is hard for me...already disabled from Meniere's. My tongue is now scalded, this goes down my throat, sometimes my lungs. Crazy stuff. After yrs of being dismissed, I have to get this bad before doctors listen. However, neurologists are still ???. Rheumatologists have differing answers. Maybe I am crazy. NOTHING in any tests, blood tests anything. I should be the picture of health. Was put on B12 shots just in case yrs ago but I continue to get worse.
I don't tolerate medications. Anything they put me on has to be a 1/4th of the lowest dose. Been in serotonin syndrome 3 times in the past 10 yrs. One of those times, I had to figure it out on my own so I was in severe hypertension for about 2 weeks.

They may still do a lip biopsy.
If all this is negative (sfn bx) then I think I've pushed my nerves beyond their limits and this is it.
Medication induced...not on much of anything really and meds I was on in recently when this got bad I was not on them in 2010 when most of this appeared. Guess I will know more when the biopsies come back...or not.

Over 6 yrs, been to hematologist, rhuematologists, neurologists, pcps, gynecologists, psychiatrist, therapists. At least 6 different ENT with allergy testing etc.

Any suggestions/thoughts from anyone welcome.

Dear I,

I'm so sorry you are feeling so unwell....I know disheartening it can be to be without a clear understanding of why you are feeling the way you are.

You write that you are not (yet) diagnosed with any type of autonomic disorder....yet you awaiting the results of your biopsies....but have you had a tilt table test? I was unaware I had such profound orthostatic intolerance....which explained a lot of my fatigue and other symptoms. I'm actually going to shell out more money to repeat the tests at the NYU dysautonomia center. They do concurrent testing of catecholamine levels....which may lead to more targeted treatment. However, you and I both know that effective treatment for this, even with more information, is elusive. However, measuring these levels might provide insight into anxiety and other hyperadrenergic issues.

Given your sensitivity to meds, you might also wish to look into Mast Cell Activation Disorder. (big thread here below....also several websites and forums on line). I'm having trouble getting a sponsoring doc for testing...for no specialists in all of NYC, but it's on the list.

A key goal of mine is to get my depression and anxiety more in check...I've had much spontaneous improvement since last April, when all of this hit....but I know I have a way to go, and it's essential to face this illness feeling emotionally stronger. A tall order! Talk therapy, as well as body work and massage are so helpful to me.....as you know, I have to be wary of meds.

This forum has been so helpful to me.....so many smart and experienced people here...I hope they weigh in for you.....for I'm still new to all of this.

So, as I tell myself today, because this has been a really tough week for me, just be kind to yourself and try to keep your strength and optimism up....for I know there are a number of people on this site who have been far sicker far longer than I have....and they have not only found helpful doctors, but more accurate diagnoses and helpful treatment....and they have the knowledge and compassion to help folks like me.

All my best,
Sylvie

Hi Sylvie,

I'm skimming through the posts and saw that you are struggling with depression.

I KNOW that the problem of depression is directly related to the inflammation caused by Immune Dysregulation.

Whenever a system or organ of the body is attacked and damaged, there is inflammation.

And depression, pain, fatigue are all directly caused by inflammation. The best way to 'check this' is to have a brief course of steroids (prednisone or methylprednisolone).

The steroids will stop the inflammation, if it exists, and the depression, pain and fatigue will stop as well.,

If the steroids don't stop the pain, fatigue and depression, then inflammation isn't the cause.

Read about inflammation and the conditions it creates, as well as the damage it does. All autoimmune conditions are inflammatory conditions.

My conditions are also inflammatory, but caused directly by my immune system attacking my body, probably with cytokines, not with autoantibody attacks on my body.

Different causes, similar results.

Take care.......we have to keep on....patience, persistence and acceptance are my mantra.

Hugs, ElaineD

Hi Elaine,

Thanks so much for your input!

Although it has basically been a life- long struggle, I've always plowed through and had a great affect....no one knew...I've also been very energetic my whole life...and had long symptom-free periods. Yet the depth and quality of this depression, which rolled in with all my dysautonomic symptoms last April, was (is) very different. It may have been set off by a reaction to antidepressants....for I had neurological symptoms for a long time....but then again, maybe I reacted the way I did because of an underlying AI disorder. ...or a Mast Cell Activation disorder. I'm continuing to have strange reactions to all meds. I'm only on 10 mg of nortripyline...for pain and depression. Helpful but not really therapeutic ...but I can't tolerate more.

In any event, I got to reading about depression, inflammation and cytokines! All news to me, and very convincing. So interesting to get your post in light of this.

As noted, my OI and POTS are severe, and I clearly have "sickness behavior, " which both my neuro (ex-neuro as of last week) and cardiologist attribute to the dysautonomia. But I hear you....interestingly, two (brilliant) buddies I've made on this site, who have AI disorders, also think I have one too. One suggested very specific tests.

My problem now is that although I feel I need further testing for AI disorders, I'm not sure how to proceed. I've got yet another dysautonomia screen set up for March 24...and an appointment with a new neuro on the 18th. Just for the heck of it, I have an appointment with yet another new neurologist in April (I'm shopping). Yet this ain't going to help with an AI dignosis.

I saw a rheumatologist twice in the past three months....two sets of tests...nada....but she finally suggested I go to the Sjogren's clinic in Baltimore. Perhaps I should? Do you have a suggestion? You have no idea how hard it is to find really good docs here in NYC....with a plethora of major medical centers.....

Is your PN an outgrowth of an autoimmune disorder? I'm so glad to hear you are doing much better.

Once again, thank you....I so appreciate your advice and input.

Sylvie

PS....I'm scared of steroids....although I appreciate your advice!

A short course of steroids can provide so much information. It really only takes a few days and you will know whether it will work or not.

I am NOT a proponent of steroid use long term, as I have permanent damage from their use. But using them to determine if your condition is inflammatory based is simple, informative and not harmful...because you are only on them for sometimes less than a week (other taper packs run about 10 days to 2 weeks). Now, if you find out that it IS helpful and your condition is, in fact, inflammatory based, then decisions have to be made as how to approach...and try to avoid the possible long term effects of steroids.

Looks like I have to reconnect with the rheumatologist. ...thanks for the suggestion!

New York and Ophtho info
 

Hi everyone, I just wanted to share some things I have learned after searching the planet Earth for doctors with INTEREST and KNOWLEDGE in dysautonomia. I try to read up on pubmed for abstracts about it, then I try to find those authors. I also have used the** for doctors who at least have enough interest to register themselves there, and from seeing a doctor on that list, I was referred to another one who actually is excellent.

Sylvia, I saw that the doctors at Columbia's Peripheral Neuropathy Center write a lot of articles on autonomic neuropathy, and there is even a paper on better diagnosing patients who were referred there for idiopathic autonomic neuropathy. I don't see any doctors on the list from NYU, but Dr. Kaufmann at NYU looks like the only neurologist on staff in the autonomic clinic, and his papers are mostly on non-autoimmune types of dysautonomia. So, I don't know if you have been to or considered Columbia yet.

Mat, I know a little bit about the eye. It sounds like you might want to ask your next ophthalmologist which part of the eye he sees nerve damage in. Ophtho's will usually photograph abnormal appearing optic nerves, and do visual field tests for patients with visual symptoms like you describe. Low blood pressure problems could cause low tension glaucoma (which can be harder to diagnose), and that would be something that the doctor would definitely want to treat...but I don't think it is even talked about much in the ophthalmology community because it may be very uncommon. Other signs of nerve damage in the eye are pupil disorders...pupils are usually smaller and are slower to dilate and constrict in response to light. Dry eyes go along with the autonomic neuropathy because the signal to the tear glands isn't normal. Also, oligoclonal bands usually implies an autoimmune process in the central nervous system, did you have a spinal tap? If you are positive for that, they should be treating you, not ignoring it because they don't know what it means. Even if you see an MS specialist, they would know about oligoclonal bands.

One thing I personally found helpful for my bp problems was to raise the head of my bed up by 7 inches, on risers, which are inexpensive and easy to find on internet shopping sites. By sleeping at a tilt, with the head up, the veins in your legs don't relax as much, so you have better tone in the morning when you start your day...anyway, it is recommended on a lot of sites for autonomic neuropathy. For me, it greatly reduced the severe headaches I was always getting from low blood pressure. Compression stockings on the legs are also recommended. I take florinef and midodrine for low bp, mestinon (helps bowels contract), bethanechol (helps reduce urinary hesitancy and retention), propranolol (lowers rapid heart rate), as well as immunosuppressants.

Most people on this forum sound young and like these symptoms are acquired, so I recommend the full panel of dysautononic testing for all the antibodies. If I was only tested for the AchR antibody, my diagnosis would have been missed again, bc I have the GAD65 antibodies. I also read that it usually takes patients like us several years to get a proper diagnosis...that means we spend several years going from doctor to doctor until we find one who knows what to do. Don't take no for an answer, and just because they tell you all your tests are normal, it only means they haven't done the right test yet. Believe me, I was told there was nothing wrong with me but anxiety for years, while I lied on their exam table with my heart going at 130. Even Mayo Clinic diagnosed me with POTS, and followed that up by telling me it was due to anxiety...and offered no treatment, so my trek continued. I wish I had gone to the Cleveland Clinic or Johns Hopkins early on, I have read excellent things about their neuro and rheumatology departments.

Most people on this forum sound young and like these symptoms are acquired, so I recommend the full panel of dysautononic testing for all the antibodies. If I was only tested for the AchR antibody, my diagnosis would have been missed again, bc I have the GAD65 antibodies.
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JJ33...can you tell me what the GAD65 antibody test is? I also just started a thread asking about the Cleveland Clinic and welcome your advice about it and alternatives. (You seem to also know a lot @ NYC...I'm eager to hear about your testing and DX experiences). Thanks!

The pupil size is controlled by the sympathetic and parasympathetic branches of the autonomic systems.

The pupil light response is controlled mainly by the parasympathetic system. It constricts the pupil in response to light and reduce this constriction in dark. Damage in this pathway reduce the pupil constrictions, so problems in the light response goes together with larger and not smaller pupils. It is called Adie tonic pupil, or Holmes syndrome and it is common in Sjogren Syndrome.
Parasympathetic damage can also cause reduced tearing and dry eyes, or it can affect the accommodation reflex which cause pupils constriction when focusing on a near object.

Damage to the sympathetic pathway can cause Horner Syndrome - small pupils, falling of the upper eyelid, and reduced sweating around the eye.
It can also cause a slower pupils dilation in dark.