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  2. Hi Marina and everyone else,blimey was that 16 years ago I joined,I've been very happily divorced for 12,I take warfarin everyday after getting a blood clot on my lung and have to have regular blood tests to check the INR so they keep the dosage right,any change of medication can upset it.My Daughter and Granddaughter called in today I didn't think Bryony was going to let me go,even Harriet gave me a kiss,next week Bryony is going to nana sit a couple of mornings back to normal before this horrible virus took hold.When I manage to get my hair cut I'll get my carer to update my photo. Stay safe everyone. Angela
  3. Gosport Nancy

    No Longer Seeking a Diagnosis

    @Stumbler Clearly tomorrow doesn't look after itself as I can't make plans since at some point it's likely I will know longer know who my husband is (my mother hasn't know any of her family members for at least a decade) I actually know a lot about how dementia works and that there is lack of support out there without a diagnosis. I can't have the brain scan not appointment at the memory clinic my dementia nurse wants me to have as I am now too confused to travel alone
  4. Stumbler

    No Longer Seeking a Diagnosis

    @Gosport Nancy , I can empathise with your husband. "Live for the day, tomorrow will look after itself"!
  5. Gosport Nancy

    No Longer Seeking a Diagnosis

    @Stumbler Exactly that.My husband gets upset when I talk about likely futures (both my parents have/had early onset dementia in their 60s and I am now also in my 60s). He refuses to accept that at some point he could end up with being my carer as my current down turn in cognitive functioning becomes trickier to handle. I was assessed for dementia in my late 30's and my cognitive functioning was already starting to deteriorate back then.The cardiac arrest and coma in 2016 didn't exactly help matters either. What I want for my husband is for him to get some help for himself so we can stay together but he just ignores the whole situation so my forward planning is becoming an impossible feat as I need him to engage with all of this.
  6. Stumbler

    No Longer Seeking a Diagnosis

    @Gosport Nancy , we have to plan for the worst, whilst hoping for the best. 😉
  7. @Marina , from the other side of the world :- International normalised ratio (INR) test | healthdirect WWW.HEALTHDIRECT.GOV.AU An international normalised ratio (INR) test measures the time taken for your blood to clot.
  8. Gosport Nancy

    What's Going On In Your Garden?

    @Happymama I've had all kinds of twiney plants in my garden at times, and like you, I pull it all up.I have let the borders grass over now and keep my plants in tubs.I still scatter lots of wildflower seeds about thoush to add random splashes of colour
  9. Hi Angela, how lovely to hear from you again! As member no.29, having joined about a month after the forum started, you're one of the forum's founding members, which means you've been a member for almost 16 years - how wonderful is that?! I'm so glad you've managed to stay safe , I'm sorry, though, to hear you have severe osteoporosis on top of everything else. I can imagine just how over the moon you and your granddaughter will be to see each other again. Please excuse my ignorance, but what's an INR blood test?
  10. Happymama

    What's Going On In Your Garden?

    I have bindweed and had to glyco a lot, and what's remaining is choking a bramble so hopefully will kill it. It comes out inside our conservatory too, or did until I slay it. We also have horsetail, which I just pull up and burn. You have to move house to get rid of it. It's immune to everything, including thermonuclear war. And spreads. Grows through tarmac. No flowers even, unlike the Welsh Poppies that have self seeded all over. I've ordered bedding plants from crocus today. Have to dig very heavy clay, and add fine grit before they arrive.
  11. Gosport Nancy

    No Longer Seeking a Diagnosis

    @Nick This actually confirmed a lot about the stages of MS grief if you like.My journey really only ended up tripping me up when I got caught up in what other people were saying to me. I remember back to times I looked at possible conventional treatments, read the longlist of reported effects.I decided early on to take the gentler route of acceptance for what is and to work with it. My current issue is I am on a mental decline that is so frustrating.made even more poignant when thinking that my lovely man might have to watch me deteriorate while his health fails. Try as I might to live in the moment and not worry overmuch, I need to make plans for a future, whatever that might be.
  12. Nick

    No Longer Seeking a Diagnosis

    Nancy, That sounds OK, Labels are just that, they don't really tell you what to do. An old piece I wrote on here might help
  13. Hi Everyone I first asked a GP about my symptoms back in the late 80s and he told me he suspected a central nervous system disorder after doing the usual neurological tests GPs can do. He referred me to a neurologist. The neurology appointment and consultation arrived early 1991 and he repeated the same tests the GP had done then said he was all for sending me for further investigations. He then asked me to wait in his side room while he took a look at my medical notes in case he missed something. After 10 minutes or so he told me that after reading my notes he had decided that since all my symptoms were most likely due to mental health issues (anxiety because I was mum to 2 children with special needs),he felt further investigations weren't needed. I would no doubt get the same response now as I am currently caring for my husband who is terminally ill. In the 30+years since, all of those symptoms have got a lot more noticeable and others have been added.My current GP knows about the new symptoms but I'm still know nearer getting a diagnosis than I was 30 years ago. I have had friends accuse me of malingering as I have no diagnosis (dumped friends now) and when I was in a coma following a cardiac arrest four years ago, hospital staff told my husband and my son on different occasions that they thought I was a hypochondriac. I can only assume that this is on my medical records as I hadn't talked to any staff at that point. I am currently working from home as a writer and also run a bunch of on-line stores so it's not like I am just a lazy so and so. I'm really posting to say that acceptance without fighting for a diagnosis has simplified my life so much and I am a much calmer and happier person for doing this.
  14. Hi all I havn't posted here for many years,I actually fall into all 4 on the list,I had a letter from my respiratory clinic strongly advising not to leave my bungalow for 12 weeks,a few days later I have a INR blood test so phoned health-centre told them situation to be told It's ok to go there,so from then on that gave me the green light to just go out when and if I want,and Angela being Angela I go out 3 times a week,socially distant,wear a mask and sanitize gel my hands as I come out of every shop,my daughter says good on you mum,I have carers 4 times a day so just as likely to catch virus from them,last week I got my get out of jail free letter from Matt Hancock my daughter,her partner and my 10 year old granddaughter from tomorrow 6th can come inside my bubble and we don't need to soc distance,Bryony told me she can't wait to give me a hug,I can also meet up with 6 people outside but do soc distance.I also now have very severe osteoporosis and can only spend a few hours in my power-chair so after lunch I get hoisted back onto my bed,don't think I'm looking for sympathy just the opposite,but if I didn't go out I would go mad as anyone who knows me would tell you. Angela
  15. Gosport Nancy

    What's Going On In Your Garden?

    @Marina This is growing on waste ground which is maintained by the local council, who have never thought it an issue worth addressing. The info you posted was to do with the plant growing in borders in private gardens. Thanks for you interest :)
  16. Marina

    What's Going On In Your Garden?

    That's fair enough, Nancy but just in case you start to have problems with it in future years: Bindweed WWW.RHS.ORG.UK Hedge bindweed or bellbind (<em>Calystegia sepium</em>) with its pure white trumpet flowers is a familiar sight, choking plants in borders and twining around any plant shoot or cane...
  17. Gosport Nancy

    What's Going On In Your Garden?

    I am not going to yank out such a beautiful plant as it appears every year and is looked forward to. I have not noticed it causing any issues with other plants as the roses turn up every year too
  18. Stumbler

    Just had MRI results - confused

    Hi @Whatisit and welcome. You have lots of strange and unexplained symptoms. You also have lots of questions and you want answers. That's perfectly understandable. @Nick has provided useful suggestions above to try and manage this. MS can manifest itself on the brain and down the spinal cord. Did the MRI scan the brain and spine? Additionally, MRI scans may not reveal a full picture. The Neurologist had obviously seen something that warrants further investigation, hence the Evoked Potentials test. However, MS is a notoriously difficult condition to diagnose so you will need to be patient as the Neurologist investigates further. Please let us know how things develop and feel free to pose any questions.
  19. Gosport Nancy

    Corona risk

    I would go by the advice posted here to check with a qualified person In 2015 I spent almost that whole year fighting off what I guessed was a virus (hard to tell what it was, because I hadn't recovered fully during that year) I eventually got to see a GP in early March the following year because by that time I was falling asleep randomly and was having visual and auditory disturbances. I was sent home with no diagnosis and no treatment and told I might have COPD (no cough so have no idea why he thought that might be)....I didn't get to have the lung function tests as a couple of weeks later I woke up from a coma in ICU following collapsing at home and later going into cardiac arrest. I still don't know what happened and have had no reason given for the flare up
  20. Marina

    What's Going On In Your Garden?

    The wild rose is indeed beautiful! Are you able to yank out the bindweed, though? Despite its pretty white trumpet-like flower, It can be a bugger of a weed to get rid of, but can literally end up strangling any other plant in its way, hence its being called "bind" weed as it binds to and winds itself around other plants and ends up squeezing them to death (you may already know this, I'm mentioning it for the sake of those who might not ).
  21. Gosport Nancy

    What's Going On In Your Garden?

    @Marina You are spot on.That's bindweed (we called it 'granny pop out of bed' as children) and a wild rose. I was just attempting to show the random beauty on a hedge.
  22. Marina

    What's Going On In Your Garden?

    I can't quite tell from the photo @Gosport Nancy as I'm not too sure how the leaves look in the photo, but might the white flower be bindweed? Is the pink flower a wild rose (looking at the buds)?
  23. Marina

    Just had MRI results - confused

    Hi Whatisit and another "welcome to the forum"! Nick's given some sound advice. Making lists is one of the most important things you can do. Also, the physical examination may help further as neuros can't really go on a single MRI alone. Is your neuro an MS specialist? If not, it can happen that they don't always know that much about MS as they don't specialise in it. An MS specialist will also know what type of lesion to look for as well as the location of lesions, as one can have lesions that aren't related to MS at all. If he's not an MS specialist, you might be able to ask your GP for a referral to one who is. This link will help you find an MS neuro closest to you: MS services near me | MS Trust WWW.MSTRUST.ORG.UK Use our map to search for an MS service that is near to you Also, sometimes, neuros might need to wait for at least 3 months to take another MRI for "dissemination in time and space": McDonald criteria | MS Trust WWW.MSTRUST.ORG.UK The McDonald criteria for diagnosing multiple sclerosis were revised in 2017. Learn more about the McDonald criteria in this A-Z entry. Additonally, it used to be said that lesions might not show in about 5% of people with MS, but I don't know if that still stands as MRI technology has moved forward since then. It might also be that any previous lesions may have healed themselves and it needs more time for lesions to show up: Lesion | MS Trust WWW.MSTRUST.ORG.UK In multiple sclerosis, the term lesion or plaque, refers to an area of damage or scarring (sclerosis) in the central nervous system caused by MS. Find out more in this A-Z entry. Good luck and please let us know how you get on, and feel free to ask as many questions as you like.
  24. The “guidance” and “advice” has, in my opinion, been as vague as can be and has changed on a frequent basis - which is why I haven’t kept updating these Coronavirus/Covid-19 topics. At today’s date, they are as follows for the “clinically vulnerable”. Details for the “extremely clinically vulnerable” are on the same pages. Till tomorrow: “You are advised to stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household or support bubble.” Staying alert and safe (social distancing) until 4 July - GOV.UK WWW.GOV.UK From tomorrow: “Although you can meet people outdoors and, from 4 July, indoors, you should be especially careful and be diligent about social distancing and hand hygiene.” Staying alert and safe (social distancing) after 4 July - GOV.UK WWW.GOV.UK “particular care”, “especially careful and be diligent”: how long’s a piece of string? Surely these vague phrases are subjective? It’s said MSers are no more at risk of getting the virus than the general public. However, getting the virus could affect us more than the general public or make our symptoms worse or we might be slower to get over it, etc. Too many factors at play to go into detail; however, the MSIF list these: “Certain groups of people with MS may be at an increased risk of becoming severely ill or dying with COVID-19. The following groups should take extra care to minimise their exposure to the virus: - People with progressive MS - People with MS over the age of 60 - People with higher levels of disability (for example, an EDSS score of 6 or above) - People with diseases of the heart or lungs” I fall into the first 3 of these. Some of us might continue to stay at home and not go out or have visitors etc, whilst some of us might be looking forward to the newer and no longer “stringent” (word previously used by the government for the clinically vulnerable) guidance. A national poll run by my county’s disability service found that the majority of all clinically vulnerable people were not confident enough with the unlocking measures. I wonder if that applies to many of us too, or are you comfortable enough with the unlocking, especially the removal of the vulnerable from August?
  25. Don't forget that as it went along, we have new info - obese = more risk, diabetes = more risk, male = more risk, over 60 = more risk Skinny = less risk, under 60 = less risk, female = less risk and Type O blood = less risk. Happily I tick for all of these. Well, not so skinny but not obese by a long chalk. Some viruses can cause MS, and this one has caused symptoms we could all recognise, like brain fog, fatigue, and has been proven to get in the brain (which is a big deal) and has caused fits in some. Layered on top of MS this would be nasty, and hard to put up with, for sure. I'm not keen on getting it, and only have been out for food, with oodles of gel on my hands and the shopping trolley before I start, and a mask, or to the shop across the road, with a mask and oodles of gel. There will be a lot of investigation after it's all finished and hopefully new RAPID protocols for prevention, plus protection, will be identified and arranged so they can be deployed in a very short space in time. I have masks to make, and some bought. I shall keep some in storage after it's done and a big bottle of gel. There will be another one. It's not if, it's when. The Chinese government refuses to get their wild meat sale under control, and there is a risk they will just make it illegal and thus drive it underground which will make it harder to identify the start.
  26. Nick

    Just had MRI results - confused

    Hi Whatisit, Welcome to the forum. The last bit of your questions gives a clue as to what to do next. Make a list. Think of all the questions you want to ask and make another list of all your symptoms. Before your next appointment condense these lists down to short bullet points and take it along to the appointment. This way, hopefully you won't forget anything. It's very difficult to give you advice, as conditions like MS can be quite complex, and for this reason the only one who can properly give you a diagnosis of what's wrong is the neurologist. The brain is a complex beast and it often takes several appointments for the neurologist to make any kind of diagnosis. You are correct in saying Optic Neuritis is often found in MS patients, however this doesn't preclude ON from other conditions. Please avoid Dr Google, stick to the MS Society and MS Trust sites. This site may prove very useful as there are several very knowledgable people here. Hope that helps a bit Nick
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Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


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