Jojo79

Red peach seeing as you are in the U.S you will likely have a much more hopeful outcome if you have sjogrens. We are fighting a useless unfit for purpose NHS system where resources are spared. Basically I'm not being treated adequately at all. 

If you were diagnosed Sjogrens in U.s you would be in a good position to access ivig and or rituximab. Seronegative sjogrens presents for many of us as a small fibre neuropathy with autonomic damage also. I had negative blood tests for sjogrens so could not get the lip biopsy which is good standard for diagnosing Sjogrens. I paid in the end, got the biopsy and the diagnosis confirmed. 

Could you look into sjogrens online and see what you think? I only had the neuropathies for years before dryness and other issues. 

I'd def look into sjogrens with that combo of symptoms. If in the UK you will be fobbed off for years if your bloods are clear like most those i know with it. The lip biopsy will be the only way

Hi all,

I am part of a very unfortunate group of people in the U.K who have seronegative sjogrens and are suffering terribly from neurological symptoms because of it. I have full body small fibre neuropathy and rapidly progressive autonomic symptoms. I am very unwell as a result 

In the UK there appears to be little to no direction whatsoever on how to treat this - unlike the US where they are certainly more pro active. Most of us are offered DMARDS for this such as steroids or cellcept. Having read about studies in the U.S the approach is clearly quite different. I have even attempted to converse with a leader in the field in the US but without being a patient of his he is unable to discuss treatment with me. 

Please can anyone here who has sjogrens with neuro manifestations such as autonomic neuropathy and/or sfn please let me know what treatment they have/ have tried and whether they feel it has helped.

Thanks all

Sjogrens autoimmune disease is a common cause of sfn and autonomic damage. I have this very badly as a result of sjogrens. Took me years to get the diagnosis. Lip biopsy was the only diagnostic test in my case as bloods always clear

Hi all, 

I discovered very recently that I have blimmin sjogrens. I kept saying this 3 years ago but was fobbed off. Only the lip biopsy which I went and paid for confirmed it. My own rheumatologist wouldn't have it as I don't have sjogrens antibodies. So now I've asked for ganglionic acetylcholine antibody test as the nature of my full body small fibre neuropathy and the way the autonomic stuff came on makes me really suspect this.

From what I have read, no one seems to have a clue about this problem either. Anyone here have autoimmune autonomic ganglionopathy and having effective and appropriate treatment with any success?

I had to pay for all of it. It cost about £2000. I have no money left and am so overwhelmed by the fact the nhs is utterly incapable of helping me. If you can find a place that does autonomic testing near you I would go to your g.p and request a referral. I would massively ham up your symptoms and print off any info that supports the case for this being dysautonomia. You will have to wait no doubt and chase and go back and chase again. 

It is so wrong but this is our nhs now, an absolute joke 

I live in the UK yogini. I found the nhs to be an absolute disgrace with this condition and ehlers danlos syndrome which I also have.

I had to use my savings to go private. I've seen the best in the field in London. Just trying out a few drugs now. Fludro first but that hasn't helped so need to see what's next. I resent the fact I had to use what little money I had but had no choice. I was hospitalised with awful problems and had no idea what was going on and they referred me to mental health. 

There is an autonomic unit in London. If you are anywhere near there you could asked to be referred. I live in Wiltshire and my gp surgery had to put the request to the ccg to approve the referral to the autonomic unit. Absolute disgrace. I never heard a thing. 

Now I've had the testing done I have a piece of paper that clearly outlines exactly how bad my issues are with bp control, I have named diagnosis of POTS, syncope and autonomic dysfunction. No one can fob me off again with this. No it won't cure me but if I need to go into hospital this paperwork all comes with me. That means something to me following prior experiwnces. The paperwork also went along with a formal complaint to my local hospital!

I get this breathing issue very badly. If I'm lying flat a while it helps. If I get up in the morning without having drank alot of water I will get it kick in pretty quickly. It feels like from the stomach upwards there is no oxygen and all my body parts from chest up to head are having oxygen squeezed out of them. I absolutely hate this symptom. I believe the bodies ability to pump blood upwards against gravity is impaired in many of our cases and therefore you have less oxygenated blood getting up there quickly enough. I think this was explained to me or I read it. I suffer dramatic bp drops so this makes sense to me. I noticed when i was on 0.2 fludrocortisone I felt like my upper body was much better oxygenated.  The fludro had risen my bp right up. The bad news was that this brought on the most agonising intracranial hypertension.  So this proved the theory that increase in blood pressure and flow up to the head improved my breathing. Sadly for me my head nearly exploded with the pain! 

A leading Professor in the field of autonomics told me not to get up without drinking a full glass of water in the morning and to keep drinking. I was told not to stand still, to fidget and to squeeze a stress ball to trigger the autonomic response and thus aid the blood flow upwards. 

There is also a wealth of advice on supplemental protocols to commence if toxicity may be an issue. I know it can only do so much but I think it will be useful for you

Missy there is a very good website called neurotalk. If you join that and continue to the sub group for peripheral neuropathy there are loads of posts on issues like this. Many were mine! There is some really useful information and guidance on tests to pursue with medical professionals. A number of people talk about toxicity issues causing rapid onset neuropathies.

Missy, what med was it? Are you talking steroids?

I too developed rapid onset issues like you and have been going on and on for two years to my neurologist. Every muscle test and nerve comes back clear. 

The other thing I have researched is called lipoatrophy. Have you heard of this? Its wasting of fat cells due to either metabolic processes or it can come with autoimmunity sometimes apparently. Patients treated for hiv can also get it. 

I have no idea how to test for this. I asked my neuro if there is a lipoatrophy person who could check this for me but no there doesn't appear to be such a person in the UK.

Do you have another health issue that you are aware of or anything before this started 

Hi Ayx, I know it's frustrating as there are so many possibilities. I dont want to add to that by suggesting things without a good understanding. I am replying as I also have inflamed sinuses which have been acknowledged in a very recent mri I had. I recently discovered I have sjogrens and this causes small fibre nerve damage and can affect sinuses. I am sure a few things can cause this but autoimmunity sounds plausible. I have absolutely no indication in my blood but felt sjogrens could be the cause - it's apparentlynthe second most prevalent autoimmune disease and is so much more than just dry eyes. After asking my nhs rheum 3 times for a lip biopsy with no joy I went private and had the biopsy which confirmed it.

Blood tests often will not show autoimmunity at work. There are various antibodies that can cause issues and I know they don't check you for half of them. It doesn't mean there is damage as such in your case, this is just a suggestion as you will easily be led to believe there's nothing autoimmune going on if a few piddly blood tests don't show it. 

Hi Missy, yes I have some of what you describe. I have some answers already though after searching endlessly. I have POTS, autonomic dysfunction and syncope. When this all started (before I realised whatv its  was) parts of my body started atrophying and I have lost significant bulk in certain parts. Had every test for this, mris of all muscle , nerve conductions, emgs and even a muscle biopsy and my neuro keeps telling me this is something else. Still don't know what's going in with that side.

All autonomic stuff recently diagnosed and I found out a few weeks ago i have an autoimmune disease called sjogrens that goes for small fibre nerves. On this note I would strongly urge anyone who suspects this could be the reason for their troubles to pursue a lip biopsy. I have no indication in my blood and dry eyes and mouth came on much after the neurooathy. I went on about sjigrens for years and was laughed at and dismissed by rheumatology dept. Went private and got lip biopsy done and guess what.. .you know how it goes. My point in saying this is that we don't know for certain what's going on and I believe these professionals don't try hard enough to look most the time. I'm not dismissing the meds btw. Could they have triggered autoimmunity and if so what mechanism of autoimmunity is underway? 

I also have EDS and have lots of weird stuff as a result including cranial cervical instability I have just discovered this week. This can cause alot of problems and can compress parts of the spine which can then result in systemic manifestations everywhere. Again I raise this as had to figure it out myself. Alot of people with autonomic stuff have EDS. Not saying you do but so many of us eds people have it 

I have seen so many doctors and I started to realise my own knowledge was often far superior to most of them on all this. I accurately diagnosed all my conditions myself and then fought for proof. I'm still not entirely there with the horrible atrophy though,time will tell.

The reason I'm saying this is because if you are not long into this journey you will not believe the ignorance and lack of knowledge so many so called professionals have on this. You will have to research yourself, join groups and trust your own instincts. If you don't feel your doctor is trying everything to determine cause go find another one.

I believe meds are horrendous and can do these things but just look at all testing options if you can to rule out autoimmunity or genetic issues. I guess the reaction to some of these meds is a type of autoimmunity in itself sometimes 

9 hours ago, corina said:

I've been having the swallowing problems on and off. They have been pretty bad up till a moment I was in a restaurant having lunch, starting to cough and really thought that was it. Fortunately I got through but I do understand the scariness! I agree it may be an idea to get things checked out but MSA is quite uncommon fortunately!

Hi Corina, you can never say never with MSA diagnosis I feel as I know it's so hard to diagnose. The suggestion was that all the tests I have had will possibly hint towards whether that's happening or not. It doesn't totally fit for me but nothing does. 

I totally understand the swallowing thing, it is truly awful 

19 hours ago, yogini said:

HI, need some more background about your diagnosis, symptoms and doctor's advice.  But it isn't unusual to have a rapid onset.  And actually people with rapid onset have the best chance for recovery.  It's scary, and it takes a while to recover, but the best thing to do (since there isn't any other choice!) is to read up and just keep plugging forward.

Hi yogini, things have been bubbling under for a long time but nothing major. I had tummy issues, bit of tachycardia, some adrenaline surges buy nothing major. The new issues are what came on overnight almost.. 

Severe migraines, pressure all round my head and eyes, eyes not working properly, breathing difficulties, tachycardia, spasms all through digestion. It may be a coincidence but I took some codeine the night this all started so badly and couldn't feel my face or arms and felt on another planet. Then the swallowing gradually worsened and now can hardly even swallow liquid. My entry jaw and face runs out of energy. 

I saw the best neurologists over the last few years and had every test, muscle biopsy the lot to check for neuromuscular issue and they have said repeatedly that they do not see that happening. I do have small fibre neuropathy so guess that is causing alot of damage. I will say that my head and neck just don't feel right, like every muscle in neck and face is being pulled all the time. 

Thanks Kim. I have mentioned MSA and therr was no suggestion this is happening but maybe only time tells. I have had a large range of tests but fear there will be no explanation for the swallowing. I am seeing a wonderful neurogastro in London and we are starting with endoscopy next week then go from there. 

It's hard waiting while you lose important functions. I had a fluroscopy where you drink liquid and they video on x ray. I have slow motility of eosophagus but said swallowing is fine. It isn't fine, it runs out of energy quickly and then doesn't work properly. 

I'm prepared for something horrible like MSA. Waiting and the uncertainty is the hardest 

Hi all, my symptoms have become very severe and I'm confused about what's happening. It doesn't look great. I don't know if any of you have had anything like this:

Severe migraines set off the more severe problems recently with terrible low blood pressure and trouble breathing. Also horrible feelings of anxiety and jitters all day long sometimes. 

The awful scary thing is that my swallowing function has gradually become severely incapacitated in space of a few weeks. I cannot safely initiate a swallow. It feels like I have lost control of it and the weakness is profound. So I can now only manage liquids and that's even scary. Sometimes it goes down and falls down my throat almost which sets off awful panic as there is no control of if. I also have been getting scary sleep apnea. I've been in hospital and had a brain scan and they just said no deficit there. But there massively is. Feels like a stroke! Been seeing Prof Matthias for tests but I worry there will be no clear explanation. Awaiting outcome of tests this week. I've been checked for primary muscle disease like ALS and this is clear. Im guessing this is a polyneuropathy of unknown cause as I have suffered from sfn for a while. 

I often feel like my brain is falling asleep and I can't control things. If the autonomic reflex is gone from such damage I guess there is no coming back from that!? Feeling scared and confused. 

Hi Mat, 

Ah you are a local! I have recently been talking with a lovely girl from Fordingbridge. I strongly believe this condition is significantly under diagnosed. I only got where I have because of going private. Fortunately my prior employers had health insurance which I have been able to hold onto. 

Hi Wilsonbed, we know how you feel lovely. I live in the UK and was recently discharged from hospital. I overhead nurses saying that they too suffered anxiety when I was in the middle of an attack. When my heart rate was fine they just fobbed me off even though I could hardly breathe. My first referral was to mental health whilst in hospital. I was asked about my childhood etc! I made it my mission to educate every single person I came into contact with whilst there. Nurses were great and curious about it but one consultant I saw was horrendous. 

I asked to see a neurologist and this was agreed whilst in hospital. Then I was told no neuro is coming and was discharged. So the next day the bad attack came again and my mum drove me to the next city hospital where they have a neurology team. Slightly better treatment there. I stayed on a few nights. 

I'm so knocked by how bad these symptoms can be and how you are treated in the NHS with it. I am printing off useful info on the conditions and in the process of writing to my local hospital. 

Just try and educate as much as you can. Print info off highlighting all the symptoms this can produce and have it ready in a folder. Also any neurologist letters. Take these with you of you end up I think hospital again. If your neuro is rubbish, get some money together and pay to see one who will confirm all you are dealing with. I am absolutely broke but if I hadn't paid a bit unfortunately I wouldn't know what I know now. It's not right I know. Can you also write to your hospital and send them the info about dysautonomia? Worth a shot. 

I am myself coming to terms with how terrifying this is and the fact people look at you like you are insane or faking. If you have any related psychological struggles they always put it down to that. So wrong. Anyway, my point is you are not alone 

☺

I'm in the UK, South England, Wiltshire. I'm 38,lone parenthood to a 4 year old and know exactly how you feel. I've just been hospitalised and need some help at home but getting it is near impossible. Luckily my sons father and his partner are very involved and helping with our son. 

I feel 100 years old and look it these days. 

Having been in the NHS system it has scared me a bit. They have no clue at all about this. 

I have this, a swallow camera showed rapid gastric emptying. I have lots of dysautonomia issues. 

Thank you everyone for your helpful replies. This is turning into a new beast every day. Today I have had terrible trouble swallowing my saliva. My throat is severely affected and the swallow mechanism is off. Is there any hope of ever managing this aspect? Im frantically trying to get into a specialist autonomic centre in London 

You are absolutely right. I'm in hospital with it all and will have to ask them to monitor it. 

Thank you both for your replies. I don't know what my BP is doing but think it leans towards the low side. Do you still take it if you have low BP? 

Hi all, new to this group. I am suffering from terrible dysautonomia. I have been told I have orthostatic intolerance. Been getting awful adrenaline surges, so bad I feel drugged and out of it. Then I can go the opposite and feel dazed and slow breathing. Have tight chest and throat also. 

I suspect I am leaning towards hyper type of dysautonomia. Can't sleep at all, head to feels tingly and full of a weird pressure sensation. 

I was taking bupropion /wellbutrin but stopped this a week ago. I felt fine on it tbh. I am looking for others' experience with medications for hyper type dysautonomia.  I get fast heart when standing, my pressure fluctuates but mainly low. 

I want to take a diazepam but am scared in case it has a negative effect and slows down functions So desperate to rest /sleep. I get woken with awful panic/adrenaline every time I drift off. 

I have HEDS and Ankylosing Spondylitis and small fibre neuropathy.