@dpommo 

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dpommo

Newly diagnosed (London)

Hi all, So four weeks ago I was happily plodding along in life and here I am posting about my story with MS so far. Through September and October I was having an extremely stressful time at work, to the point where I had threatened to resign out of principle. That all worked out in the end but on a Sunday night four weeks ago I asked my flatmate to roll me a joint (he smokes regularly, I don't) as I felt I needed something extra to send me off to sleep. I woke up and went to work on Monday morning, and by lunchtime I still had the sensation of feeling stoned. This continued until the next day a real lack of balance had also joined my dizziness and vertigo-like symptoms. By Wednesday I had developed double vision and went home from work early. At that point I realised I wasn't still stoned (!) but assumed I might have an ear infection as I could feel pressure in the left side of my head. On Friday night I noticed I was having trouble remembering some words and decided it was time to go to A&E. A doctor rushed through my symptoms with me and told me not to worry, it was probably just down to stress. When I said that this wasn't really a satisfactory explanation he suggested I visit the eye hospital to have them check out my double vision. I was diagnosed with palsy in one of the nerves leading to my left eye and they sent me back to A&E for a CT scan the following day - that came back clear but I was asked to come back after the weekend for an MRI scan. My trouble with speech was giving them cause for concern and MS was brought up in conversation, although the nurse said this was unlikely due to my age (33) and the fact that I'm male. I spent a few days with Dr Google and felt that MS seemed like a real possibility, so started to swot up as I was fairly uneducated about MS and had never knowingly met anybody with MS before. Whilst waiting for my MRI scan at Royal London Hospital I ended up speaking with a junior doctor who was super helpful and he promised to call me as soon as the results of my scan were back. He called me later that evening and started the conversation with "Hi it's xx from Royal London - we've got your results back and unfortunately something has showed up". My heart skipped a beat and at that moment I fully expected to hear that I had a brain tumour. He went on to say that he wasn't qualified to go through the results in detail with me but that there was visible scarring of my brain. I asked him if he could explain further but he insisted that I would have to wait for the neurologist to be in touch, but that he didn't know when that would be. I am fortunate enough to be in a position where my company provides me with private health insurance and so took it up with them instead. They were able to book me in with a neurologist later that week who went through the results with me, explained that there were numerous lesions in my brain and spine and that it was likely MS. He requested blood tests and a full brain and spine MRI for a few days later, which subsequently showed lesions on the spine, as well as some older lesions which were no longer active. It turns out that a bout of numbness and tingling I experienced 7 years ago during another period of acute stress was probably my first episode. Given that I had a few weeks to start getting used to the idea I might have MS, it didn't feel like such a sudden shock. I randomly woke up in tears each of the two mornings after my first MRI scan when I didn't know what I had and suspected MS, but that was more out of a feeling of frustration and helplessness. Other than one afternoon last week where I really started to get fed up with the symptoms, I haven't been able to get down about it. I am quite a pragmatic person but even I have been surprised at how well I've taken it so far. I buried my head in books (Overcoming MS and Swank Diet) and research papers about MS weeks ago when the subject was first mentioned and immediately changed my diet (no red meat, no dairy, absolute minimum saturated fat, homemade juices daily) and cut down on smoking (I am going to give up but felt I could forgive myself that vice while the diagnosis sinks in). My family and friends are a lot more worried than I am, although it seems they have finally started to believe me when I tell them that I'm actually fine. I think seeing me in person and realising that I'm not at death's door definitely helped! I went for a session in a flotation/sensory deprivation tank which helped massively when my symptoms were at their peak - for anyone who hasn't tried that, it's literally the most relaxing thing I've ever done and luckily I had already discovered it months ago. Massage has also helped and my symptoms cleared up yesterday, exactly 4 weeks since they started. I took a 10,000 UI dose of vitamin D3 yesterday morning which made me feel absolutely amazing, and followed that up with the same dose this morning - that's something I'm going to supplement with regularly, as well as B12, omega-3 oils and iodine and anything else useful I discover. Some of the symptoms have made me laugh at times, the main one being a real lack of depth perception and judging my distance from other objects. I have still been a regular user of the London Underground over the past few weeks and noticed I was quickly becoming that creepy guy who stands far too close to people. My next step is a 3 month scan to look for new lesions before we decide whether or not I should start on any treatment, although I'm hoping my self-help strategy can kick MS's butt until then and delay any need for prescribed medicine. The more I discover about MS, the more I want to meet others of a similar age, which is why I included my location (London) in the title. One thing that surprised me since receiving this diagnosis is the lack of support groups in this city, despite the fact that there should be around 10,000 of us in London alone (yay for Shift!). As MS varies wildly from person to person and is such an unsolved disease I have been really curious to listen to others' stories and how they are dealing with it. I feel like I'm on the right path and have met a few MS-ers over the past week but am hoping that over the next year or so I'm able to meet others in person and that as a group we're able to benefit each other, whether it be with shared knowledge, insight or just some support, solidarity and someone to listen us vent. I've been very open about my diagnosis with people I know, including at work, but the look on their face when you tell them you have MS is starting to become annoying! I've found it very therapeutic to just sit and talk with other people who understand it and realise it's not a sudden death sentence. Congrats if you reached the end of my essay, consider me a happy new Shift user!
@potter

It sounds like you are handling your diagnoses well so far, you still have a few more stages to go through. I cried for two weeks after I was diagnosed. I was better prepared for it than you, I had two aunts who had MS and I had been having symptoms for ten years. My doctor thought I was a hypochondriac, and only sent me to a neuro when he thought I had hurt a nerve in my elbow. The rest is history! The second stage I went through was Fight, I still have some of that. I am starting into my third stage of Acceptance. What all MSer's face and it never leaves us is Fear. Fear of the future, fear of failure , fear of being a burden to our love ones. I am 64 and I put weed killer on my yard and sprayed algae killer on my house today. I am tired but feel great because I kept forging forward. Potter

@Katy79

Hi @dpommo, Happy to share my story. I'm 37 years old - and MS notwithstanding I would describe myself as the healthiest and happiest I've ever been. In late Feb/early March this year the central toes on my left foot went numb. I thought new high heels had pinched or they had got too cold standing on a train platform in ballet pumps. The next day I noticed the same sensation in my groin - and blamed it on an ill adjusted seat in spin class. No pain or discomfort or bathroom issues - just an odd numbness. Two days later I mentioned it to my boyfriend who suggested I'd tweaked my sciatic nerve and I started googling for stretches. Dr Google suggested I had a terrifying medical emergency called caude equine where the spinal column crushes the spinal chord - or MS. I decided Dr Google was a drama queen and went to Body pump and then spent the afternoon sliding about on my are learning how to curl. The next day the toes on my right foot were numb - and I called the Dr who sent me to A & E. An MRI of the lower spine rules out caude equine (phew!) but did show two "t2 hyperintenserties suggestive of demyelination". Like you I have the benefit of private healthcare, and saw a neuro the next day who referred me for a full MRI with contrast. This showed multiple lesions in my brain (including Dawson's fingers), one lesion on my brain stem and multiple lesions all down my c-spine, with two enhanced lesions on my t-spine. I was referred to an MS specialist neuro the following week, given a diagnosis of CIS and told it was highly likely that I had MS and that an episode of vertigo I'd suffered in June 2015 may have been my initial episode (it was diagnosed as BPPV at the time and seemed to be fixed by Epley). Getting to this point was quite frankly terrifying. The issue had come out of the blue. In between neuro appointments I went for a long walk (25 miles) along the Thames and found myself quietly crying and making all sorts of silent pacts - trying to ignore the numb toes and prove they didn't count (this isn't quite as odd as it sounds - my boyfriend is an ultra runner and was training along the Thames for a 100 mile race and I often walk part of the course whilst he is running so we can pub lunch together at the end. This was a particularly bleak little walk though). I was given steroid tablets which fixed my numb toes in a couple of weeks. By the time I received the CIS diagnosis I'd accepted I had MS and was ready for war. I'm a corporate lawyer by trade and training and this part of my psyche kicked in. By the time I received the results of my 3 month scan in late June I'd learnt much more about the disease and decided on the treatment I wanted - to the point that my biggest fear was that the scan wouldn't show anything different and I would have a fight on my hand to move onto aggressive treatment. When the scan showed 1 new lesion (no new symptoms) I went out for dinner to celebrate (Fish! In borough market - important to get that omega 3!). My scan also showed old lesions had shrunk which was marvellous. I received Round 1 lemtrada in August and am now 3 months post and fit, well and optimistic I've given myself the best chance of staying that way (which will improve if I stop waffling on and get on the running machine! - sat in the gym lazily drinking a coffee as I type). My approach: - hard drugs - I'm more scared of MS than side effects - Vitamin d3, omega 3, B12 and iron (I'm anemic) - regular and varied exercise (cardio is neuro protective, a strong core will help in the long run, endorphins beat depression and fatigue and weight needs to be managed. Certain exercises (e.g. Boxing) are good for cognitive skills too) - healthy balanced diet - more of the good, less of the bad but nothing excludes - good sleep patterns - try and maintain a positive outlook and hope for the best rather than dwelling on what could be - Shift is fab for meeting people (on line and in the real world) in similar positions to swap information and share support. This helps take away the isolation I recognise I am incredibly lucky as, despite all the lesions, my symptoms are mild to non-existent (at the moment at least), I've had access to excellent medical treatment through my work healthcare and the NHS and I have the support of my thoroughly beautiful boyfriend. Good luck and stay well and positive Xxx