So as you all know I haven't been well of late so a few weeks ago went to see GP in regards to wanting my bowls tested and my stomach , seen gastroendoligist last week who has done so many tests on my for cancer blood array still waiting results , yesterday CT scan on my pelvis and abdomine which has shown up I have pancreitous ( influmation of my pancrious ) and gallstones , need to go back see specialist find out why so seems like I'm acutely getting down to why I have been so unwell also have an endoscopy to look into my stomach and a sigmoscopy to look at my bowls and intestines due to positive bowl screening test results , so all this is getting back to a previous post I did on leaky gut and the link to FND .. Can't wait to have it all sorted out but I will keep you all posted on my progress and fingers crossed I start to getting back to the real me I hope 💟❤️️🙏😇😇 the pic is of me at the start of this relapses 7 months ago and I now look nothing like that can't wait to start looking like that again
Influmation of my pancrious and galls... - Functional Neurol...
Influmation of my pancrious and gallstones
So glad you've got another answer... nothing better than yes yes yes I've got something that is known....welldone with your battle xxx
Thank you Hun I know a yes is so much better than a I don't know or making someone feel shit cause no one believes them as I say I feel we need to be checked from head to toe and a whole array of test not just the brain amuse the answer is in us somewhere 🙏🏼👼🙏🏼👼
Hi Ronwyn,
Iv mentioned this a few times so people might get sick of me saying it, but as someone who is not happy with the FND diagnosis I sat down a few weeks ago and went through all the symptoms of things I have that have been clinically diagnosed and then compared them to the FND symptoms.
I don't have all the FND symptoms but the ones I do are covered by my Sjögren's syndrome which is an autoimmune disease and as serious as say rheumatoid arthritis but has not been taken seriously until the last few weeks. There is a website called Sjögren's.org and it has a picture of the body and symptoms including pancreatitis and bowel problems.
Basically I was just told it's a problem with your parotid glands, the Ones in front of your ears that helps your eyes produce liquid to keep them moist and saliva to keep your mouth most. So iv been on eye drops for a while and just drinking lots. Then I went on the Sjögren's posts for this website and everyone was horrified that I was just using eye drops- artificial tears. It sounds like it's not much but I did know that if you don't keep you eyes and mouth hydrated it can lead to kidney and liver failure. Now I'm finding out it should be treated like rheumatoid arthritis as it is not as well known but just as serious and I have 3 autoimmune diseases already and a family history of more and my symptoms have been getting much worse the last few months.
I found out that there is also a risk of other organ failure if I don't get this treated and I'm more likely to develop lymphomas.
Anyway I have coeliac which has always been well managed since diagnosis but Iv had motility issues for a while now and blamed in on medications slowing my guts down. Iv started taking buscopan and everything is much better. But Sjögren's has Iritable bowel disease and pancreatitis as symptoms, not sure what your other symptoms are or if you have been tested for rheumatology diseases.
Sjögren's affects 1 in 100 people in the US from the research Iv read so far but as it's just a dry mouth and eyes people might not take that seriously and docs might just prescribe eye drops as the majority don't know what Sjögren's is. Iv even been to hospital recently and the staff obviously never bothered to google Sjögren's as the paramedics had written it on my chart so they left me 6 hours with no eye drops or mouth spray or nothing to drink. By the end I had no voice and couldn't speak my throat and neck glands were so painful and they had the cheek to ask me what was wrong with me as I was leaving!
Sjögren's is a real disease it has the memory and concentration issues too which I struggle with so anyone with it should he seen by a rheumatologist and a neurologist as these are both organic. (Not in the head).
I saw my neurophysio who is treating me for FND and told her my self diagnosis that I thought I didn't have FND and my symptoms are all Sjögren's. she said immediately- i don't think you have FND either and she is trained to deliver Physio to FND patients. She said from the first meeting she thought that as I have all over weakness and no balance and no break in symptoms like I was told when first diagnosed, you will have good days and bad, I have literally had severe symptoms for 3 years now and never had a good day. and with FND you tend to have weakness in one spot and then it moves to another area. That is not me.
Iv been interested in the link between autoimmune diseases and our diagnosis of FND since the beginning as so many in here seem to have autoimmune diseases.
I'm not saying everyone has Sjögren's instead and trying to mess up the what I imagine is a lot of work the good neurologists who are dedicated to researching and getting answers from FND are doing but I would suggest if you think you might have rheumatology factors to get blood tested.
When I told my gp about my self diagnosis and that my Physio had agreed with me he immediately brought me in for blood tests for all rheumatology diseases. It is likely I have rheumatoid arthritis as I do get a lot of joint pain and I have also been getting the lupus rash on my face a lot in the last year.
I'm waiting to see both specialists now. The worst thing is even if i do have these diseases the blood tests only come back positive on 70% of people who have each disease so that's a little frustrating as I want concrete answers.
So if you think it could be autoimmune related and I'd suggest you have a look at the symptoms in Sjögren's.org ask if you can be tested. The sooner it's diagnosed the healthier your body will be as there are medications for rheumatology diseases unlike FND.
I suspect Iv done damage all over by sitting for 3 years with what is looking like a wrong diagnosis if FND.
Good luck and I hope you get back to you 7 months ago 😊
Hi Amelia
Yes I like you struggle with my fnd diagnosis to and have always believed that there is another reason for why I get so sick . I have many symptoms heat intolerance in spring and summer I can't seem to get out of bed due to fatigue I also loose the streNgth of my left arm, memory loss, speech impairment ,loss of balance, walking difficulties,pins and needles in my hands , restless legs mainly at night as my legs get to hot.. I have always had problems with bloating but put it don't to my stomach ulcers caused by the helobactor virus, did coarse 1-1/2 years ago and not bacteria free. But when I had my relapses back in September I knew it wasn't like every other year as I felt like I wasn't improving . Also noticed blood in my stools sorry for the info soaked for a gut test GP got me to do bowl test which showed positive to 2 out of the 3, last week fin all saw gasto surgeon went over my symptoms he decided to book me in for camera to look at bowls, stomach and did a whole array of test from all cNcer and Tumor makers to pancreous enzym still waiting on results. He also sent me for CT scan Whitchurch showed gallstones which is blocking a thin tube near my panreous and showed pancreitous . I thought I had my ulcers back as a few months backlist armed getting stomach pain similar to ulcer pain did the heliobactor breath test but came back negative , in all this time my health has only gotten worse and now is affecting my breathing . I will here back from my surgeon todY in regards to all this and fingers crossed he will help me acutely get some answers seems like after years of fighting for someone to acturly listen to me and believe me that when I say something isn't right . We know our body I would never make up being sick when I feel like I. Dying inside and when know one wants to listen or do more tests pass you off as fnd or mental health... I hope to be back to my normal self real soon and I so can't wait either as it has been so frustrating and upsetting that doctors let people pretty much die from not listening or taking the time to listen to the whole story .. I have read about autoimmune desies can cause many of my symptoms but have had the anz and anca tests done Whitchurch came back negative but had a high Igg level so I never went back to see rheumatologist as I felt like he didn't believe me when I saw him .. Anyways will keep posting with up dates once I know more about what's going on and hope that I'm on the road to a quick recovery as 8 months being u well is to long and I've missed out on so much aspialy being with my kids doing family things instead being stuck in bed.
🌟⭐️✨💫Ronwyn 🙏🏼🙏🏼👼🙏🏼
Your stomach might benefit from proton pump inhibitors like omeprazole, there are a few out there as they stop acid production in the stomach.
You didn't say what you tested positive for in your digestive system or are you still waiting? I know it's queezy but I had slight bleeding all my life and didn't take it seriously as I had had it my whole life. When I got diagnosed with coeliac in my 30s and started eating gluten free the bleeding stopped immediately and I told my gp who I had a great relationship with and he was horrified he had never known this. I thought it can't be that serious if Iv had it my whole life. But maybe that's the problem getting people to listen anyway is hard enough so you leave out the little things bevstse you think they won't be taken seriously or mean anything when maybe I could have been diagnosed years before.
I feel your symptoms, Iv had what feels like just 6 months of fatigue now. I'm over it. I think if I have FND when do I get her my break and feel better like I was promised.
Wishing you luck with your tests and appointments 🤗
I am wondering about this for myself since my aquired angioedema diagnosis and low C4, light chain ratios and antibody to C1 NH inhibitor. Have you had those checked too? Do you swelling anywhere?
You are way ahead of me. I got diagnosed with FND then told goodbye in a letter.
Iv self diagnosed that the symptoms of my already diagnosed but docs ignored Sjögren's syndrome covers the FND symptoms so I'm 99% sure the FND will be getting dropped from my list of medical issues soon.
I have coeliac, hypothyroidism and Sjögren's and my gp says likely I have rheumatoid arthritis and I might have lupus, been getting that rash for last year.
Just had all the rheumatoid bloods done and waiting on results and waiting to see rheumatology consultant who specialises in Sjögren's and works with Jon Stone! As Sjögren's is 100% organic and is part rheumatology and part neurology and has the foggy brain so waiting to see both of them, hoping to get FND booted out, then go from there. Still frightening. Iv seen some bad cases of RA but I'd rather start treatment than get worse. Iv went from being able to be on my feet all day to sometimes struggling to walk room to room
Coeliac used to just be thought of as gastro related but it is part neurological now can affect hair, foggy brain etc.
It seems all these autoimmune diseases are related to neurology
Wow! We seem so similar.had gallbladder out at 21.pancreatitis at 52. Brain tumor 57.back surgery fusion 48. Now RA. Hand swelling at 60 and now finally diagnosed AAE-2. Please keep me updated.❤️💘💓💕💖
I can't believe how positive you have Stayed going through all that. It's people like you who keep me going 😊❤️🤗⭐️
Honey we all need to keep going life goes on as they say, and we can't be defined by what we have as I look at it we have an illness yes it has ups and down but we still need to move forward and keep living just as we would have to do if we had MS , Parkinson or even cancer we need to sometimes just keep smiling and showing every one we are fighters.. my brother said to me one day don't ever give up fight until the very end but do it with grace and a smile as there is still much to live for and to be grateful for.. I know this can be hard for most people but I always have a positive outlook on things , if I smile it shows my kids that I'm not scared to face whatever is thrown my way.. One day at a time is the best way to cope , sometimes we can't change what we have but we can change how we let it affect us ..
Hope you are having a positive day today Hun
Shine bright and never let anything dull your sparkle
Ronwyn ✨🌟💜⭐️✨🌟💜
Thanks Ronwyn, I'm so with you on how you behave in front of your children as they are so sensitive to what's going on with you. I also believe in being truthful but I think parents need to show they are strong for their children. I do not mean to offend anyone who is having a bad day, I just mean it's ok to have a bad day but I'm still your mum and I'm strong and here for you, even if you feel rubbish. It's ok for kids to see illness as long as they understand. Knowledge and communication is the key.
My aunt my most beloved person in the world died from cancer last year. She came into the city to meet me weeks before she died with my uncle as I'd come down from Scotland and they are in England and she wanted to take me sightseeing but uncle said we did all that last year but as Ill as she was and still looking beautiful with her make up all done we went for a coffee on the way to her radiotherapy session. She was so tired we had to keep sitting every few minutes but she was prepared to take me sightseeing!I'd even said il meet you at the hospital but no she insisted on meeting in the city. She died 8 weeks later. she only took paracetamol up to the day she died telling everyone the pain was ok and she didn't need anything else. I'd suggested she get a pain regimen going but she declined. She was in so much pain that night she got taken to hospital it took 3 ambulancesto come out to the house, my uncle is 6'4 and my aunt 5'0 and was about 35 kilos at the end but they just couldn't move her she was so bad. It took 6 paramedics6 hours to get her comfortable enough to move her. She died in the early hours of the next morning surroundedby her gazillion family members but she fooled everyone with the paracetamol.
Your aunt was an amazing women she never gave up the fight nor did Gavin chances stop her from living . I watched my mum die from cancer but unlike your mum she gave up the fight long before she passed away that is why I keep going like your aunt no matter how bad my day is I will always push myself do things with my family. Althoughmy kid most are all grown up I still have 2 teens I also have 8 beautifulgrandkids and I want to watch them grow I don't want to miss a day . Sometime life sucks and hands us a curb ball but it's what we do with it that counts , I want to say I never gave up I never stopped living and I didn't let no illness stop me from still finding some happiness in life . FND may have taken a lot from me but I won't let it take all of me and like a boxer I will keep fighting back 😇🙏😇🙏😇🙏
Ronwyn I love your attitude you remind me of my aunt and funny you called her my mum because I always wished she was my mum. She and my uncle were together 43 years. She had 1 daughterwho then had 5 kids who now have 10 kids between them and growing they are the most beautifulfunny caring family. My cousin is so like my aunt and her kids like her. It's funny going down now and seeing my uncle play tea parties with the little girls he's so huge he will be talking to you about something and having his imaginary tea topped up by a four year old and he has huge hands with this tiny little teacup I want to laugh.
Also when my cousin was a teenagerthey found a moving sack floating in the canal. She was with her friends so they pulled it out. It was a black puppy. She took it home and they kept it and it lived on the same diet as the rest of the family for 18 years. Then their next door neighbour got married and his wife didn't like cats so the cat would be at my aunts door st 7am and stayed with them until 11pm when it went home and slept in the front porch. Also 18 years. Then they started to have an array of cats coming through the house. They always had 3 cats at any one time. Most were neighbours cats coming for a visit and a sleep on the couch some were strays, but that whole street was in a beautifularea, really green and bordering the country and everyonehad cats. At the end when my aunt was having radiotherapy there was one cat who had perfect love hearts on both shoulders I have a pic, who would wait every night for them to get off the bus and walk them home. I got to experience that and thought it so sweet. I worriedwhen she died that the cats might stop but my uncle still had them jumping in the windowsfor a cuddle and a sleep and sends me pictures so I'm happy he's not alone.he never is anyway due to 5 grandsons who are always over or taking him to the pub and the girls go separate times or the whole family piles into their 2 bedroomhouse. I'm exhausted after one day. As I grew up with one brother but it's nice to know he's never alone. And I feel there's just something about my aunt and uncle and their house that makes humans and animals gravitate towards them 😊
Attitude, Gratitude, Humor and Grace.....
The only thing I have control of in life is my attitude. So I choose to find Grace , gratitude and humor... Otherwise I would be angry and bitter and life would suck.
As most people know I'm on my own here so when I go to the supermarket I'm like one of those old people now that chats to the checkout person. I noticed when I came back to this country as I was I a country that missed the recession that there are a few 70+ male workers on the checkouts and it makes me sad. I imagine they probably retired then couldn't afford to stay retired. I could be totally wrong but before it was always uni students working part time or ladies in their 40s. I try to through the same guys checkout if I can as I'm local and he always jokes with me. It's makes both our day a little nicer I think.
Ronwyn.
Thank you for continuing to write and fight. I see a most beautiful person in you.
Maybe help for you is coming soon. I know the need to be back up and taking on new life. You are extraordinary person.
All our family's love to you. Keep your strength up as you can. My prayers continue.
Dan / Seattle
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