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.

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.