Anybody got any 'positive' MS stories?

[florenceandthemac]

If positive is the right word?
After a couple of months of blood tests and x-rays, querying whether I may have psoriatic arthritis due to other symptoms, I recently presented at the GP with numb hands and ongoing eye pain, which he is now more concerned about than the other issues and has sent me for an MRI to 'rule out' multiple sclerosis.

It's up to 4 weeks wait with the NHS so I am going through my private healthcare with work. But obviously I'm worried, and was hoping to hear of other people's experiences?
To be fair, they don't need to be positive stories. Happy to hear from anyone, including those who have been sent for the same tests but didn't end up with an MS diagnosis.

I had MS testing done a few years ago and I turned out to just have an “unspecified autoimmune response”, but I was really scared too. However when I looked it up (usually a very bad idea!) I was somewhat reassured because depending on what type you have, you can feel just fine for a very long time.

My mom’s cousin was diagnosed with MS decades ago and has had a few flare ups but for the most part has been fine. She uses a cane occasionally now but she’s also in her 70s so it doesn’t seem out of place, and she doesn’t need it all the time. She’s very active and feels well most of the time.

Best of luck!

I was diagnosed with "probable" MS over 35yrs ago when I totally lost feeling in one leg, was told just observation at that point. Further testing 4yrs later, with new symptoms in my hands and one foot, by a different neurologist who said it wasn't MS it was carpal tunnel (in my foot??) and wanted to operate on my wrists. I declined surgery and decided on a "wait and see" approach. I got on with life, ate a good diet, have had occasional numbness/tingling in hands and feet over the years, but it goes and was more annoying than debilitating. I am retired, fit & healthy and not worried.

Just to reassure you - I have MS, I was diagnosed 4 years ago and I have been very lucky so far in that all I have to do is remember to take my treatment (a pill a day, no side effects) and turn up to the odd hospital appointment.

I haven't relapsed since the episode that led to my diagnosis, I lead a full, restriction-free life and feel absolutely normal.

Of course I know that this may not always be the case, but there are lots of excellent treatment options and research is progressing all the time. It is no longer a death sentence and even if it progresses, there is now treatment available which didn't exist 10 years ago. The NHS have been absolutely incredible every step of the way.

The only downside for me so far is that travel insurance costs more and I can't afford life insurance with a pre-existing condition!

Good luck OP, it is an anxious time, I hope your appointment goes well.

Diagnosed in 1989 only recently rely on a stick outside, had a career for over 35 years, only had sick leave once for MS. There are lots of treatments coming along now that are looking very promising. My advice is exercise, escpecially swiiming, pilates, yoga. I wish i had done more of that

My mum had MS. She got diagnosed when she was 22. She said she will always be grateful to a really helpful GP who told her not to let it define her and to just live her life normally. She kept herself as healthy as possible and although she did have a few issues, she basically did live a normal life. She died in her 70s but that was from cancer.

I was diagnosed 12 years ago. I am fully mobile, healthy. in the last 12 years I've travelled the world, become a mum, trained and succeeded in a tough profession and career changed and succeeded again.

The progress in medication available in my time has been phenomenal. I now take a pill twice a day and live a 100% normal life. I have had 1 relapse that actually made me feel ill back in 2014, which I fully recovered from.

MS research is now focussed on stopping and reversing the condition. It's amazing.

Don't be scared. The worst part of my MS was the fear and anxiety in the build up to the diagnosis.

My impression is that it is very common to be tested or let’s say referred for an MS check if you are displaying neurological symptoms. So don’t worry. Secondly, my understanding is that it’s very important to have a top neurologist for the referral as, and I think a poster touched on this, mistakes in diagnoses can be made. I would go to London if I were you and get let’s say a top consultant neurologist at one of the London hospitals who does private work for the consultation eg Ben Turner

A close friend has MS and she is fine. My understanding is that in most people there is not a lot of disease activity.

my very best wishes

My daughter was diagnosed a few months ago at 17. She has had a few issues since she was 13, and has had two earlier MRIs. A lot of things can be due to other causes, and it is hard to know what is down to MS, or something else.
But we are in London now, and after her latest symptoms (tingling and numbness) she went to A&E and had a high contrast MRI the next day. They immediately said it might be MS (several lesions on her brain and one on her spine) but also that it is a process of elimination as there is no definitive test. After numerous blood tests and a lumbar puncture and questions about her history, she was diagnosed two months after first presenting to A&E.
She was about to take her A levels at that time and needed some vaccinations so she has yet to start treatment. But as PPs have said, medications are good and the aim is she will lead a normal life, with some adjustments.

I have MS, the relapsing/remitting kind. This means I have relapses where my symptoms are worse (numbness, tingling, weakness).

I haven't had a relapse for about 7 years, since I had monoclonal antibody treatment to retrain my immune system not to attack the myelin sheath around my nerves.

I feel incredibly grateful to have had an AMAZING neurologist on the NHS, and a GP who referred me immediately after my initial symptoms.

Keeping up with exercise and (trying!) to eat healthily helps massively - I really notice if I haven't moved enough over the course of a day.

As a PP said, there have been incredible advances in treatments in the last few years, and living with MS is something that so many of us are able to do very easily and well.

Good luck! 😊

I was diagnosed with MS in 2007, have had a couple of relapses.sonce but no permanent disability and had been symptom free since my last treatment!
I exercise regularly (running and gym) still with no issues.

I have MS and have had it for over 20 years. Ran the London marathon in April and did the ride London 100 miles bike ride in last month. Don’t get me wrong, it’s not always perfect, but I feel pretty positive about it.

My MIL was diagnosed with MS a few years ago. Apart from the odd bad day witr her left leg and some fatigue it hasn't progressed at all and she feels very well.

I have had MS for a long time. For the first 10 years after my diagnosis, I was physically very able. I was easily walking 10,000 steps a day, commuting into central London and living a very busy and active life. (I’ve never been particularly sporty). I did have constant symptoms (including no feeling and limited dexterity in my non-dominant hand), but these were easy to hide from pretty much everybody.

Since 2016, I have found it progressing more. I’m officially still only living with relapsing remitting. Although I have periods of clear relapse, the remitting is definitely getting less and, in the not too distant future, I’m expecting to be told it’s has become secondary progressive.

However, I still work full time (long hours) in a busy, demanding and very senior role that I love. Getting appropriate “reasonable adjustments“ has been no issue at all. I drive an automatic car (DVLA are aware of my diagnosis) and I have been using a folding electric wheelchair since the autumn of 2018. Although I was reluctant, it has been fabulous! I can put it in and out of my car by myself and so I have retained my independence.

I still go out and meet friends to go to the theatre, concerts, supper etc by myself, as well as with my husband. I volunteer for a couple of organisations in my community. I’ve got two children in their early 20s, one still at university. I’ve been abroad with just my daughter and I have spent this last weekend, helping my son move into his second year house at university. They were both at primary school when I got my likely diagnosis. We’ve always been open, but low-key with them about it and family life adapted.

People that don’t know me well would be surprised to hear that I don’t think I could live independently on a permanent basis. I’m fine at home by myself for two or three days and nights and I can stay away in hotels (assuming the room is genuinely accessible) for about the same amount of time.

However, there are lots of things I can’t do - or at least things that I can’t do in a sensible amount of time without significant difficulty and/or pain. I can’t load or unload the dishwasher. I can’t really prepare a meal without assistance. There are some items of clothing that I can’t manage by myself and only a couple of pair of shoes that I can put on and assisted.

That last part paints a really bleak picture, but put it alongside how I have described my life and I hope that shows that this is something that you fit into your life. It means things are different but there is so much that I can still do.

I'm undergoing tests now for MS amongst other issues

I've got an optic neuritis, but my MRI didn't show mylation

I've also got swollen painful joints (it feels like someone has hit me with a hammer )
My limbs jerk involuntarily when I'm sleeping and wakes me up

I've got bone degeneration.

None of my consultants agree however on a diagnosis and right now if they said it was MS I'd be relieved to know

My exh was diagnosed December 2003 after losing his sight driving to work, I was 7 months pregnant with ds. It took until January 2004 & two courses of steroids for him to get his sight back. He had four relapses in his first year & started on a drug trial for
Rebif1a, he was put on it permanently straight after the trial. We still managed to go caravanning right through my maternity leave, we went fishing regularly, by the end of the year he got most of his independence back & his relapses slowed to one every fourteen months, we could mark on the calendar exactly when they would be & plan our lives around them, he drove, did school runs when I was at work & coped very well. He had a massive relapse just before we split up & was in hospital for six weeks where he had plasma exchanges, which are some kind of medical magic, before he started his first one he was paralysed & needed hoisting out of bed & in his wheelchair, four days later after two exchanges he was walking with a zimmer frame & when he had finished the course of six he was completely back to normal. If you do get diagnosed, get to know your MS nurse, often they know more than the doctors, ask if they do a newly diagnosed course. We went on one that was once a week for 6 weeks & had education about MS, a section about the disease modifying drugs, pain relief, how to stay well with MS, diet, exercise, the effect being diagnosed has on mental health, relationships, work, benefits, finances & gave a chance to meet other couples where one of them had been diagnosed, it was really useful. Definitely think about drug trials as usually they are the final trial before a drug is released to patients & mean that you get in first to get it prescribed, we live in Sheffield & exh consultant is one of the top research professors in the country, there were constantly trials going on for new drugs. Your MS nurse will also put you together with MS specialist physios & OT, take all the help you can, the OT can give you lots of aid to help you retain your independence, from something as simple as a device to help you put your socks on to the best lightweight wheelchair. If you get prescribed a wheelchair, don't think it is the end of the world, you don't have to use it, it us there for times you need it, stick it in a cupboard until you do, exh came in handy when I broke my leg. If you have critical illness cover on your mortgage, you will most likely be able to claim & have your mortgage paid off. Make sure you claim any benefits you can like PIP & ESA, you can claim PIP even if you can still work & don't forget if you qualify your other half may be able to claim Carers Allowance depending on how much they earn.

I was living with MS for years before being officially diagnosed in 2021. I got annual MRIs, and I did not take any meds due to side effects. I had one flare up in 2021. My legs decided to a break and I was numb from the waist down. I decided to try MS-4. The numbness and Muscle spasms went away after a couple of weeks, but it took almost 3 months to walk properly without a cane. In June, it will be four years without incident, and I am extremely happy that I made the decision to not take any meds and went for the MS-4 formula even though my neurologist got upset and one told me to quit my job because I will be disabled. Well, I am not disabled, I still refuse to take those meds, and I am doing just fine. Believe in yourself and go with your instincts. Doctors don't know it all. I’m surprised a lot of people with MS haven’t heard of the MS-4 protocol, Visit uinehealthcentre. net I hope you find it helpful