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 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

--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