Why don't doctors try searching harder for the causes of neuropathic pain?
 

Instead of offering us drugs such as Gaberpentin - which will only ever mask pain at best - why isn't more effort made to establish the causes of all types of neuropathy? Why can't they try IViG on someone like me just to see if it helps as a way of establishing the cause and slowing down the deterioration of nerve damage?

I'm irritated because my latest rheumatology letter states that he is suggesting I try Norotriptyline and Pregabalin but I'm declining. The implication is that it can't be that painful after all. But I've told him that, after several years of severe burning pain my main symptom now is widespread pins and needles with numbness and this spatial issue/ disorientation. If my problem is with my proprioception from lack of sensation (and my diagnosis of SFN is a clinicical one from a neurologist) then how on earth would drugs such as these help me? They aren't designed to modify the neuropathy - only to reduce the pain. My pain has largely burnt out now and I'm left with loss of sensation and muscle weakness/ poor grip, inability to regulate temperature, smell or sweat and an unpleasant taste the whole time. Plus I'm exhausted from having to think extra hard about where I'm walking and not losing my balance if I turn too fast or am crossing roads or faced with changes in floor patterns. How on earth would Pregabalin or Norotryptyline help with this? :rolleyes:

The two oral surgeons/ maxilofacial doctors I've seen have both advised me to avoid these type of medications so I will. But I read of friends with OA and RA being offered laser therapy for tendinitis and yet this kind of therapy is never suggested to me for nerve pain/ numbness/ widespread tingle and burn/chill. I just get fed up with doctors shrugging and telling me they will probably never find the cause now so I need to accept that these nerve pain drugs are all they can offer me.

I've tried three already with disastrous consequences. I wish there was some kind of anti static device one could climb into and climb out static free and able to feel steady again.

I have been reading your posts and really sorry to hear what you are going through. I have been in the same boat, refused to take Amitrityline for the same reasons. Luckily after a long and frustrating struggle I found a neurologist who was ready to help me get immunological treatment, although I don't have a specific autoimmune diagnosis.
I really hope you would find a better doctor.

they cant try harder, because NEUROPathy have so many causes, and some of them are unknown, so there is no base where they can start. Something like a common cause of pn, can be seen as idiopathic because of unusual presentation. so in the end they will randomly throw medication at you, or in some cases they will say you are making it up or looking for drugs to get "high".
you seem to also have autonomic neuropathy. those drugs appears to only mask the pain, not suppress like anti-inflammatory. Ivig is very expensive, which is why there is hesitency, and also it might not work for everyone with pn. it is because neuropathy has so many causes, it hard to point it at "diabetes, sogrens, or some wierd diseases

Thanks so much stillHoping. I'm trying not to expect too much but I should be seeing a neurologist in a larger hospital with a good reputation and better equipped to test and more acquainted with rare types of neuropathy. Fingers crossed for me and glad you've got your neurologist fighting your corner at last. I still have a 10 week wait to see one as this is the NHS. X

Neuroproblem I know you are right in your analalsys but I refuse to accept that they can't try much harder to find the cause. After all there are any number of cancers and types of arthritis but they research these like crazy in order to save lives or improve the quality of life for sufferers. So why do they accept that with PN they can say "cause Unknown" so readily or dismiss as a psychiatric issue? I'm clinically diagnosed so presumably they aren't saying its psychological and I'm a pretty rational, healthy living type so all I'm saying is that they should try harder with neuropathy to find the cause because it costs society/ the tax payer if I end up unable to work (as I did last year) because of symptoms or drug reactions. If they tried IViG and it made no difference then this would suggest mine wasn't immune mediated whereas if it worked they could have a more functional member of society who would be costing the tax payer less in other ways. I find it short sighted and frustrating that they bandy around this term idiopathic so readily. Idiotic and pathetic is how it sounds to me!! :rolleyes::wink:

Good luck, I hope he would be worth waiting for!

Hi Mat52

I understand your frustration. Like you I'm left with no specifically diagnosed cause for my neuropathy but from a process of elimination the most likely one is autoimmune secondary to Addison's Disease. The neuro didn't label it idiopathic - but only because I made it clear before he said it that I wasn't going to accept that label.

I was offered gabapentin but refused (for now at least) - I have reactions to so many meds and like you feel it only masks the pain. Saving it for later if the pain gets really bad. I'm guessing the reason no one even mentioned IVIG to me is that it's extremely expensive and probably rationed (I'm also under a public health system). Knowing my options are limited (I can't take most pain relievers due to them interacting with the essential Addison's meds), I'm starting to look at alternatives - particularly LDN -Low Dose Naltrexone. I'm just starting my research and have a ways to go - including getting it approved by my endocrinologist - but from what I've read so far it looks possible - it's not a cure for PN but a modulator of the immune system which may provide 20-30% relief - that I'd take.

I may already have told you in earlier posts that it is likely your PN is caused by the Hashimoto's - it is very common that even though a primary auto-immune condition is being well managed the secondary condition caused by it (ie PN) does not resolve.

Sorry this doesn't give much hope but stay determined and persevere with the system and hopefully a way to manage your symptoms will be found.

Yes the elusive cause of chronic disease, now that's a tricky one. I'm a medical researcher and I can tell you the body is so complex compared with our understanding. It's good to always look for the cause, but so many times, we just mask or pacify the symptoms. I can tell you for sure I'm glad I started Lyrica because it has helped my sleep and so pain too. These drugs naproxen and Lyrica, they keep life bearable for me, I am happy with that.

That's what is great about this forum..the doctors don't have time and don't recommend the needed and helpful supplements anyway. Their job is to write scripts...truth.

Same with thyroid help, they don't take time and just go by numbers....we are not numbers, we are symptoms...I've been thru years on the thyroid issue and I'm done...took a lot of my work and support groups to get the help I needed for years.

Everyone has to learn to work on themselves to save themselves and get as healthy as they can. There is plenty of help from dr google and this dr is free. And friends are free too, they want to help us.

Mat,

It is SO hard to find the cause of neuropathy in some cases. They could literally run tests weekly for a couple years and not be finished checking every possibility. You have to have someone that is committed to helping you, and that, my friend, is hard to come by in today's world. They are so overworked, they just don't have the time to give that sort of attention to every patient. They do what they can in the limited amount of time they are given. It's NOT the way it should be...but it's just the way it is.

I had forgotten about a previous thread of yours that I meant to follow-up...until just now seeing this thread. We were talking about vascular issues, if you remember. I really think this should be given some attention. There are several vascular conditions that can cause (directly or indirectly) neuropathy. Vasculitis for one, and there is another autoimmune condition that comes to mind based upon your 'neurological events' that have taken place. This is APS (antiphospholipid syndrome). Have you ever been tested for this? It's just a matter of a few blood tests (nothing costly or rare). The main one is aCl (anticardiolipin). Other tests are Lupus anticoagulant and Beta-2 Glyco-protein 1 antibody (B2GP1). APS is a clotting disorder and I believe you have mentioned some odd 'neurological events' that may have been some sort of TIA for clotting event. APS is tied to several vascular issues that cause neuropathy. So I think it's worth looking into. But back to the vasculitis itself...has anyone looked into this as well?

I have profound proprioception issues, and I can tell you that typical neuropathy medications will NOT help proprioception. Those drugs are designed to alleviate the pain and some will help with the tingling/buzzing/etc...but that is about it. And they DON'T cure the problem...just help make the patient have a better quality of life. Masking the pain may not seem like the thing to do, but when a cause cannot be found, one must consider every option to at least increase their function and meds that give them some manageability to their life.

"There is plenty of help from dr google and this dr is free."

I agree with this but please remember that Dr Google has neither scientific nor medical qualifications.

I think that a healthy dose of scepticism is a good idea when interpreting a search - there is a lot of poor-quality information on the Web.

A "second opinion" from a reliable site is a good plan in my view.

Some reliable sites are:

PubMed (http://www.ncbi.nlm.nih.gov/pubmed)

The Linus Pauling Institute (http://lpi.oregonstate.edu/)

The Cochrane Collaboration (http://www.cochrane.org/)

NIH (http://www.nih.gov/)

If it wasn't for the naturopath giving me suggestions for the BURN I've lived with for 5 yrs from femoral nerve damage, I'd still be living with the burn. Bad enough I live with the numb thigh, but the BURN is gone. She gave me 4 suggestions and I chose two and did my research and ordered what I wanted to try.

MAT52, I agree you and others. I was dx with PN about four years ago and I thought it mostly confined to the end of my feet which were tingling and burning. All along I was feeling a tightness in my face and scalp almost like a sunburn. I soon started to feel itching in my right hand. Time went by and the burning in my feet became worse while the other symptoms seemed to level off. I asked my neurologist if he could explain what the cause could be and he said only that it was idiopathic. As I pressed him he said he didn't do tests other than the basic EMG, etc. but he would refer me to the University of Utah Neurology Dept. where they had been doing quite a bit of research on Neuropathy. After 3 visits I quit going. I realize it's a teaching institution, but I was simply a class prop. Each time I went there would be a different student who would come in and do the basic clinical examination followed by the research doctor who would ask them what they found. In every case the answer was the same "progressive idiopathic neuropathy". I was so frustrated I finally said I knew I had progressive idiopathic neuropathy, but the reason for my visits to try to find out why! The students suggested I change my soap or shampoo and they all agreed. Finally I turned to the neurologist who had been the author of so many papers that I had read and he said he didn't know what was causing it, but it "wouldn't kill me". I've never been back.

Over the past two months, my neuropathy that won't kill me has exploded. My legs are fully involved with tingling, burning, and lack of sensation. The same is true of my hands and arms. I continue to have sunburn feelings in my face and scalp, but the symptoms are worse. I'm barely sweating when I run whereas before I'd be dripping. My eyes get real dry. I've always been in excellent health. I've run nearly 30 marathons and countless other races and relays. I've always been very careful with my diet and never went to the doctor's except for injuries. Now I have a serious condition and no one will help. They all say take this pill or that. I know that is the standard treatment, but how is it that were not to give up when the doctors find it so easy to do so.

I try real hard not to be gloomy. I'd much rather be upbeat and optimistic. I retired last April after 32 years as a City Manager. I had great things planned for these years and now this. What's my future look like? Has anyone been down the same road as me with their symptoms. Does this horrible disease ever stop progressing and just level off or is this the beginning of the end. I too am looking for answers.

Thanks Bluesfan. As far as I can gather LDN (there's a good Facebook page for this btw) isn't available in the UK. I was told by my rheumy that I should perhaps ask for a referral to endocrinology if I started getting orthostatic hypotension - but presently I only have hypertension as far as I can tell from testing my own BP with changing posture. I might go and see an endocrinologist privately armed with my blood test results to date. My b12 has just been done and is really healthy at 622 - which is annoying because pernicous anaemia is very treatable.My main thought is that I have a neurological form of Sjogren's Syndrome. I have the dry eyes but not the dry mouth or the antibodies so this hasn't been suggested by my rheumatologist but there's a very good page on on John Hopkins about this. http://www.hopkinssjogrens.org/disea...complications/

So my search continues and I'm almost resigned to becoming number and dizzier until I evaporate into some invisible blob! X

Unfortnately I was unable to tolerate Lyrica - it made me very angry and dizzy. Same for Gaberpentin and Amitiptyline finally gave me severe palpitations after three good years. Cymbalta triggered a whole host of horrible infections for me last year when I came off it. So for me, and many others I believe, these masking drugs aren't an option. Nor are the four DMARDs I've taken and had severe allergic reactions to. Naproxen helps me a lot but after three days my tummy kicks off with GERD so NSAIDs are not a long term option for me.

I'm taking Levothyroxine, Losartan and newly on Amlodopine. I started to swell in the face last week with what I recognised as an allergic reaction after two lots of anaphylaxis from DMARDs. So I was taken off it and restating it today. My face is red and hot but I'm hanging in there as really hate the idea of soaring blood pressure. It's an endless tightrope for many people between medication and symptoms but I'm resolved that for me personally, there has to be a cause for my ever progressing SFN and if this can be established there might also be a treatment I can tolerate. More researchers like yourself are needed and more focus on the nervous system and autoimmunity in my opinion. But I realise I'm bias!

Im so sorry to read your story. It's very like mine in terms of your symptoms. I don't sweat anymore and overheating is scary. I have no suggestions but masses of sympathy. My face (gums, lips, nostrils and left eye) and feet are now very
numb, eyes terribly dry always and scalp very itchy despite no sign of dryness. It is a kind of hell but maybe if we both keep on badgering the health professionals one day we will find the and we will at least then have a name for our suffering. Take care. Mat

My new rheumatologist suggested APS at my first consultation and we were both quite excited that at last something might emerge which fitted perfectly - I even get livido on my legs he observed. But all three blood tests have drawn a blank. Same with Vasculitis - ANCA negative and also Cryoglobulins normal. I did have photos of what he considered to be a vasculitic rash but I think it was just a follicular rash as yet another drug allergy. I'm increasingly convinced I have a neurological type of seronegative Sjogren's having doctor googled my symptoms along with paired Oligloclonal bands. But finding a doctor who will recognise this won't be easy because it's not a very well understood disease here. I'm sure you will have read this page but just in case it's useful to others;

http://www.hopkinssjogrens.org/disea...complications/

Thanks as usual Enbloc for your help. Funnily enough steroids really helped almost straight away with the dizziness more than any other symptom. The oral surgeon felt this was very significant. The dizziness vanished after six months on steroids and only recently returned. The steroids didn't help the neuropathy much although I would flare up each time I dropped a dose. This makes me wonder if the cause is proprioception or perhaps some kind of autoimmune vestibular problem or something MS like?

Jimbo have your doctors ever tested you for inflammation or Sjogren's antibodies Ro and La? Even if these are negative you might have Sjogrens so worth reading this: http://www.hopkinssjogrens.org/disea...complications/

Funny you posted that page....that is MY doctor that wrote that article...Dr. Julius Birnbaum!! He's been my doctor for 8+ years now...saved my life!

Anyway, keep in mind that those labs for APS CAN show negative, then positive, then negative again. If it has been a while since being checked, it might be worth repeating.

Being that the steroids helped CONFIRMS that it is inflammatory based. And I agree with you completely that is it autoimmune. Is any of your doctors even interested in looking for that inflammation that the steroids is helping?? I know there is only so much they can do, but they have right in front of them a treatment that helps, so that should point them at least in the direction of the cause. Backwards from the normal approach, but it still works and has been used in medicine many times.

Is the livedo still there? Both legs? Is it ever on your upper body or arms?

http://www.hopkinssjogrens.org/disea...complications/

Yes thanks for these links. I would like to add my latest favourite link from doctor googling.

Re Caroline's point about acceptance - I would also want to respond by saying that I think that acceptance is all very well if you are older and have a musculoskelital cause for your neuropathy ie arthritis or post operative nerve entrapment or sciatica. But feeling that your small nerve fibres are slowly dying off in droves and you are having autonomic and proprioception issues at a younger age makes it less likely or appropriate that a person can just accept these symptoms or the resulting deterioration surely?

Look at the amount of money that goes into cancer research. If a fraction of this funding went into researching disorders of the peripheral nervous system then we would know much more - especially where it comes to autoimmune forms of neuropathy. If the fundamental cause of the the SFN is discovered then I do firmly believe, from personal experience, that the SFN might be slowed right down or even halted in its tracks or reversed.

Wow that's amazing Enbloc - I'd be so delighted to have a doctor of this calibre! It's so well written and well set out. Lucky you in this regard!

The APS tests were run last September and the third, most obscure one is still to come back from January.

I don't get livido anywhere but knees and feet really and even on my legs it's not that noticeable. Nor have I ever had blood clotting issues as far as I'm aware. And I did have a miscarriage but went on to have three sons.

I agree with you that the disappearance of the vestibular issue with steroids is significant but my rheumatologist didn't seem to want to take it on board. I suppose I don't want to be stuck on steroids forever either but nor do I want to be forever walking in tiptoes clutching walls and stationary objects to get my bearings.

Also my latest realisation is that, along with my dry eyes my scalp is alive with tingle. I haven't been able to stop itching it for months and yet, unlike previous stages of my life with eczema abs alopecia, there is no flaking or dryness to be seen. It only occurred to me a few days ago that my scalp has joined in the burning and parasthesia since I came off methotrexate and more recently off steroids. But how to get back onto immunesuppressant medication with no swollen joints or positive antibodies is another matter entirely.

Finally another question Enbloc. Do you have constipation with your PN/ Sjogrens? This started for me in December and I have heartburn too. The GP suggested it was just stress related but it came on very suddenly for out of the blue and is still a real problem for me. She did say the neurologist may be able to help - which baffled me but perhaps you might understand this more than I do? Constipation as part of neuropathy?

I hear ya. Really really hard to accept. Every time I think I can accept it, I can't. I think making the best of it and accepting it has to be different for me. If I accept this **** then it will be like giving up. There has to be something that can stop this process.
From autoimmunity to protozoans, parasites, microbes, viral causes, metabolic issues..... there is a reason our nerves are being damaged and there has to be a solution. I can't imagine living the rest of my life like this. I'm trying to make the best of it as we all are.

Actually, both the itching (without dryness, flaking, etc) and constipation are signs of neuropathy.

Pruritus/itching for neuropathy is different than a normal itch. It is NOT due to dry skin--but instead an annoying itch that you never seem to be able to satisfy with scratching, and is definitely part of SFN. I have it, sometimes, all over. It can drive you nuts, because, as I said, no matter how much your scratch, it doesn't go away...until it just fades away in time (which could be minutes, hours, days, etc). Many people have talked about the itching here on Neurotalk, so you might be able to find other threads/posts.

Constipation can have MANY different causes, but it CAN be related to neuropathy. Constipation can be an autonomic dysfunction, from the lack of GI motility. Being that you mentioned the heartburn type symptoms, you may have some delayed emptying. There are non-invasive tests for GI motility (gastric empty study). Very easy test where you eat some contrast laced eggs and then lay down for 2-3 hours while they scan the movement of the contrast until it empties from your stomach. The amount of time it takes determines the result.

Actually, those with Sjogren's also have constipation just from the GI track dryness. This type of constipation is different...more regular movements, but hard stools. Whereas constipation from neuropathy is more typical constipation...just not moving normally.

You have to be one of the most well informed and clear thinking people I've had the good fortune to come across on a forum Enbloc. I'm so very appreciative!

Without going into detail, either Sjogrens dryness or autonomic neuropathy could apply to me frankly. It all started with a week of being sick in December but I used to get very blocked up periodically as a child and young adult. When I was eleven I was rushed into hospital with probable appendicitis that turned out to be constipation - humiliating!

However I rarely get the other extreme and stools were very health until December - which makes it stranger because the onset was sudden and I'm now living on Laxido powders despite eating the same very healthy diet as always.

But your doctor says in his article that neuro version of Sjogrens can cause autonomic neuropathy so guessing it could be either or both. Sometimes I spontaneously vomit for no apparent reason too but thankfully this is rare so far. My rheumatologist says in his recent letter that I mentioned autonomic neuropathy to him. He wrote that possibly neurology or, if orthostatic hypotension starts, endocrinology might be of use with diagnosing this. Not sure about the endocrine link and my GP refused to refer me to an endocrinologist as she couldn't see any purpose. Any thoughts? I could try and see one privately but I don't think I have orthostatic hypotension - just full on hypertension! Mat x

There is NO need for endo to do Dx of autonomic dysfunction...it is NOT their primary field. The two fields that Dx this are neuro and cardio (especially is orthostatic hypotension is involved).

Thanks. I wonder what on earth my rheumatologist was thinking of then? I think you've answered this question from me before (sorry) but is it possible to have autonomic neuropathy without having orthostatic hypotension?

Looking thru this thread, and I didn't mention it here, but elsewhere on the PN area. A friend who is now 85, has lived with neuropathy for 15+ yrs due to statin drugs...she did all the doctor drugs and lived with the side effects, but she did them for many yrs. For the last 5 yrs or so, she has been taking grape seed extract and off the drugs and so much less pain overall. She still takes tylenol or advil when needed, but she's sold on grape seed ex. And this woman is allopathic all the way. She heard me so long that she finally got on grape seed ex. She buys hers at costco....

Yes, there is many facets of autonomic neuropathy. Some people just have sweating or balance issues, while others have urinary problems and/or GI stuff. Some have everything (cardiac included) or just one thing. There is a hefty list of systems involved.

BTW, the livedo reticluaris IS an autonomic dysfunction too. It is spasms of the medium sized blood vessels...and this is caused by autonomic dysfunction in the vascular system. It is also possible to get the cardiac vaso-spasms (another autonomic dysfunction) and this feels just like a heart attack because the vessels can actually collapse to some degree in the spasm process and reduce blood flow to/from the heart.

I want to thank you for all the kind words. Sadly, my knowledge mostly comes from personal experience. I have ALL facets involved in my dysautonomia, so I'm quite familiar with the testing, symptoms, etc.

I realise that your knowledge comes, very regrettably, from personal experience Enbloc. But it's the calm and collected way you deliver your comments that I find so reassuring and helpful.

I'm not in your league yet sympatically which is just as well given that I don't have access to much cutting edge thinking in rheumatology or neurology in my neck of the woods. Most doctors I've come across still see Sjogrens as a disease that mainly affects the eyes and mouth and possibly the vagina although it's not very Scottish to mention this! - and is usually just seen as a relatively minor player compared to RA, Lupus, Scleroderma or Vasculitis.

But as I collect more and more autonomic symptoms on top of existing ones, I realise that slowly but surely I'm being affected by neuropathy in ways that I never anticipated in a million years. This thing may not kill me directly but I could have a stroke, heart attack, fall down steps and break my neck or walk into a moving vehicle and no one would know that it was the neuropathy that killed or paralysed me?

I'm customising an old wooden walking stick tonight to make it more presentable so I can use it in public. I bought a collapsible walking stick in an airport three years ago during an RA flare. At that stage my biggest fear was being disabled by joint erosions. The walking stick I bought then isn't fit for purpose because the joints wobble a little and anyway it's ugly. Now I'm having to resort to a stick because I frequently miss steps, swirl with swirls (decorative floor surfaces), feel disembodied and disorientated in crowds or if I turn my head or tilt my head to look up at something or if lighting changes unexpectedly or if a large dog runs past me. My spatial awareness in confined spaces is kaput!

So I'm customising a stick to prod at the ground in front of me rather than to stabilise myself due to painful stiff joints. Of course my friends and family will all assume it's because of RA and that's okay except my new rheumatologist doesn't believe I have it because he didn't see it for himself and it's long gone.

From what you are saying I'm resolved to keep learning and to look for a rheumatologist who can at least think outside the box. I will print off your doctor's article about Sjogren's neuro symptoms and ask the neurologist what he or she thinks about it. Only about ten more weeks of research time left for me to wait!

Okay thanks Caroline - I'll give anything a try but I think that the effectiveness of any suppliment will depend on what is causing the PN to begin with. I would never agree to try statins.

I'll look in our UK health food chain store for this extract and come back to you here if it works miracles, or even half miracles!

Mat, it COULD reduce the pain but not overnight. My friend didn't know for 15 yrs what was causing her issue, it was 30 yrs of statins. You have no idea what is causing the nerve pain? Could be from RA and Hashi, RA meds if you take any. I was told I had Hashi many yrs ago and over many yrs I take Iodine daily, selenium 400mcg is a good dose, thyroid support and today I don't know if I have elevated TPO #'s or not.

Grape seed can be subtle for many and could be profound as it was for me when a lifetime of allergies and sinus issues were gone in a short time...that was in 1995.

The subtle FOR ME is that it may be preventing cancer(s).

Hi Mat

I'm guessing your rheumy may have suggested an endocrinologist if orthostatic hypotension (OH) starts because some endocrine disorders have OH as a feature symptom. This may just be their training kicking in (ie: linking a confounding symptom to a known disorder and associated specialty - as opposed to thinking laterally and considering alternate possible diagnosis.)

You can test yourself for OH if you have a blood pressure monitor at home.

yes its pretty annoying when doctors dont give you answers when theres obvious problems. giving someone a "psychiatric" diagnosis, or throwing medication is easier than finding an unknwon cause, with anxiety/depression they can use it as an excuse to dismiss your other symptoms. neuropathy is pretty hard to find a cause, unless its from well known associations, diabetes, spinal injuries etc. Neuropathy/ or pn also is not well understood as a symptom, and is often seen as a patient is making it up because he or she has anxiety.
I assume you are using socialised health care? this is where it gets very political, as many people do not want a socialised health care"in the us as an example", because they are afraid of the "quality of care", and it gets very political(which i dont want to discuss here). PN doesnt have as much notierity as cancer and arthiritis, cancer because of its awareness, arthiritis is famous because its medications/advertisements of monoclonal antibodies. even i havnt heard of pn til i started researching it a little over a year ago. the most common cancers get the most research and attention, the rarer the malignancies, the poorer the research, treatment, and prognosis for patients, and it is often misdiagnosed as other cancers. it is because anxiety/depression sufferers often complain of PN issues, which why doctors will dismiss it as a symptom.

Hello,

You know me (crashdoll). :)

Autonomic Neuropathy is not difficult to diagnose if you get tests for the symptoms. So, it should be something that is relatively easily e.g. yes or no, no shades of grey as much as other conditions. Orthostatic hypotension and/or PoTS can be easily ruled in or out with a decent blood pressure machine. I know you seem concerned about AN but having followed your journey for a while, you issue don't sound like other people I 'know' on social media, particularly with regards to the balance issues you describe. It seems to be the positional changes that cause real issues and trigger off the diagnosis, particularly in people who are younger. AN of the GI system is a bit more than constipation which is very common and not necessarily a sign of anything untoward. It's quite distinct and obvious if you have delayed gastric emptying, particularly if it's affecting other parts of the GI tract. It presents quite erm loudly...is the only word I can use to describe!

Anyway, a neurologist can diagnose if they have any concerns or send for tests, although the primary symptoms will dictate the first specialist you come across. For most people I know, they start with Gastroparesis and then are later diagnosed with the AN. Then again, I frequent the GP social media sites, so obviously their primary symptoms are gastro.

It's mostly about controlling the symptoms too. There isn't an overall treatment for AN because the symptoms and causes are so variable. So, even if it is going to take a while to see a neuro, you can still manage in primary care with your GP.

Take care. x

Hi S. If you read my conversation with Enbloc here you will see that I have asked if it is possible to have AN without OH - bevause I only have hypertension currently - and she replies yes it is. I don't know how easy this non OH type would be to diagnose though.

I never remotely suggested that I have gastroparesis - not nearly in that league. However I don't want my consipation diminished to common! Mine isn't normal for me and is becoming chronic and my stools have completely changed from my normal. I don't think it's common if you don't normally suffer or eat foods lacking roughage or aren't taking meds such as codeine.

The GP is not interested in anything more complex and anyway I'm between GPs just now. It never occurred to me that my constipation was a neuro issue until the GP said she thought it might be for me, along with my rising inflammation levels (PV and CRP). The things that make me think I have AN are because of the progressive SFN, dizziness/ spatial issues, total inability to sweat, strange tastes (long before the constipation started), heart palpitations, and loss of sense of smell (this has been quite useful recently though with our drain problems!). Hope this explains. Mat/ Twitchy/ M x

I have to admit that my knowledge of neuro stuff is incredibly limited, I suspect you know more than me. I only know the basics, mostly about the common diseases that I come across at work; MS and MND.

All I was saying is that AN can be conclusively tested for, so it's something that your neurologist can rule in or out. Also, that there won't be one overall treatment, it is symptom management e.g. laxatives for constipation. It's not like other more complex conditions like SLE where diagnosis can be long and erm, what's the term, subject to change and according to opinion. You know what I mean; in that some rheums say seronegative SLE cannot exist, some disagree.

I hope you find the answers you are looking for with new neurologist.

:)

I come here sometimes for the expertise S - it's amazing how much some people know about the various causes of PN - people like Enbloc , Bluesfan, Kiwi and MrsD. The reason it's much more complicated than you perhaps realise is because AN and constipation can be part of diseases such as SLE or Sjogrens or sometimes diseases such as Parkinson's, Multiple Myeloma or Amyloidosis and MS and MND - to name but a few. There are also the rare types of inflammatory neuropathy such as Guillain Barre - on the news a lot just now and CIDP and AIDS - which also list AN as part of the disease process. If you find the underlying disease that is causing the AN then you might be able to slow down the progress.

I'm not sure how easy AN is to diagnose if it's not affecting the blood pressure orthostatically or the heart..yet? I think you might just be assuming AN is the type associated with OH or Gastroparesis - the type you have? Or part of CNS diseases you have mentioned.

I believe it's possible to do a sweat test and several other nerve related tests but I did ask a neurophysiologist about this and the skin/ sweat test certainly isn't available in Scotland she explained. Small fibre neuropathy and the neurological features of some diseases are still not always recognised or understood in many places. It's only from coming here and from finding a link to an article about Sjogrens with neuro complications written by Enbloc's rheumatologist at John Hopkins, that I started wondering about my constipation and itchy scalp (no dandruff or dry skin).

I'm on high doses of Laxido already but it hasn't returned me to anything like my normal yet - every three days something occurs (!) but this is certainly nothing like my normal. And also I'm troubled at having to live on large quantities of laxatives long term, especially when I'm already eating lots of fibre and drinking lots of water. No abdominal pain, no wind, no diarrhoea - just occasional vomiting after meals and some nausea. Otherwise it's just a case of pooing pebbles most days and feeling very tired, bloated and uncomfortable.

Re grey areas in rheumatology as opposed to AN - my rheum is adamant that there is no such thing as a seronegative connective tissue disease and says this is in accordance with EULAR criteria (and ACR too I believe). This has taken me by surprise and this link below was extra helpful for this reason re seronegative Sjogren's. Mat x

Ps here's the link I'm referring to for your interest: http://www.hopkinssjogrens.org/disea...complications/

That's an excellent article thanks Mat (and enbloc). I can only wish it had been around when my father was diagnosed with Sjogren's (about 20 yrs ago).
I hope you're progressing with finding answers - that article certainly seems to include info that relates to some of your symptoms.
We're all just one big jigsaw puzzle with missing pieces. :rolleyes:

Actually, in many conditions that cause AN, there can be one treatment vs symptom mgmt. Take diabetes for example...which happens to be the most common cause of AN. In some patients (all depending on how long their condition when untreated and the severity), if they get their blood sugar under control by treating the diabetes, then AN symptoms resolve. This is also true for some other causes. I have Sjogren's and found that IVIG has not only helped my immune deficiency and peripheral neuropathy caused by this (to some extent), but some of my cardiac aspects of AN have improved as well.

I'm not saying that it works in all cases, but there certainly can be one overall treatment in some situations. You are correct that symptom mgmt is the most common, but if people get Dx early and the root cause is known, then chances for treating the overall condition greatly improve with success.