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Everything posted by Jojo79

  1. 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 th
  2. 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
  3. 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 attempt
  4. 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
  5. 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 a
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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.
  11. 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
  12. 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 d
  13. 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 dis
  14. 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.
  15. 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
  16. 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.
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