the story continues …
I saw my neuro for the first time today and he diagnosed me with MS (90% certainty). Even though I’ve had mild symptoms in my legs for 3 years now after a recent episode of Optic Neuritis a few weeks ago I had tests and a MRI and am now diagnosed. It’s all been a whirlwind experiece but I’m quite impressed how quickly it was all done, kudos to the NHS.
Now I feel like I’m on a new journey and I need to think about lifestyle changes. I had another blood sample taken today to check for vitamins in my system, maybe that will show something.
In some respect I feel lucky that it was all done quickly but obviously unlucky to be diagnosed with it. I was actually more scared that the tests may have found something else, you can’t hide anything from a MRI.
My main concern now is work and trying to reduce stress, I’ve always been described as laid-back and easy-going but where I’m living at the moment is far from ideal to work and live, the stress of living here has probably contributed.
I don’t know if there’s any help that I can get in that respect and I need to look into any financial assistance that I may be legible for, I don’t want to think that way as I can still technically work but I feel something needs to change and at the moment I have very few options. Let me know if anyone is or has been in a similar situation, especially if self-employed.
Well, thank you all for your advice so far, it’s much appreciated. I’ll do what I can here to help and reassure others and hopefully my story has helped.
Nice to hear the NHS can still be efficient! Sorry about the diagnosis mind you.
I’m afraid there is not a lot of financial support available to help prevent people getting worse - it all kicks in when it’s too late for that! The main disability benefits are ESA (if you are too sick to work) and DLA (to help with the extra costs associated with being disabled). If you have a look on the DWP website, you should be able to find a benefits checker thing that will help you work out what you might be entitled to. It’s not easy getting these benefits though - if you want to apply, I recommend that you join the benefitsandwork website. It’s about £20 for a year, but it’s worth every penny as it tells you all the inside info.
You’re right about stress. Many of us find it a complete killer How to reduce it while maintaining a self-employed income is a tricky one mind you. The obvious thing is to charge more and work less. (This is what I did many years ago, but my timing was very lucky so I could get away with it.) Maybe take on a partner so together you can bring in more, but individually do less? What might work will depend on what you do though.
Getting diagnosed is one hell of a challenge to current priorities. Don’t rush into making any big decisions yet though - take it one day at a time until you get your head around it all.
Don’t forget the diagnosis “housekeeping”: you need to tell the DVLA and you should check any policies you have that might have a critical health clause (e.g. your mortgage, if you have one) - MS is a payable condition.
If you haven’t already heard about it, taking a hefty vitamin D3 supplement is commonly recommended for MSers now, typically 5,000iu a day (Healthy Origins are cheap on amazon at the moment). It also makes a lot of sense to eat a healthy diet. Smoking is not good for MS, but alcohol is OK in moderation (in fact, there is evidence it’s good for MS). Keeping fit and flexible is also good for MS.
At some stage, this might all hit you like a ton of bricks. Don’t panic - it’s normal! You’ll get through it - one day at a time
I was going to say this and didn’t, but a pm has made me think I really should have: 90% sounds a bit on the low side for a formal diagnosis - is your neuro doing any further tests or anything to get closer to 100%? It’s rather important to be wholly confident about a diagnosis. Kx
Thanks for the info Rizzo. I’ll be getting formal documentation from the neuro in the post soon. He sounded very confident in his diagnosis but I understand what you’re saying about the 90% figure. The MRI showed lesions present and the only further tests to be processed is the blood test testing for vitamins. I felt like he kind of threw the 90% figure out there but got the impression that he had very little or no doubt that it is MS. He’s given me a formal diagnosis so I think that he must be more confident than the 90% that he mentioned. I’ve heard people talking about lumbar punctures but this was never mentioned at any stage. What can make them 100% sure? I felt he was pretty sure of the diagnosis before he saw me and the further tests that he did on my eye and leg just confirmed it in his mind. He’s given me a prescription for steroids to try and speed up recovery of eye and leg. What’s your feeling or experience of steroids to aid recovery of an episode? Many thanks Rob
If he’s putting it in writing then I guess he’s really a lot closer to 100% than he said. There’s no getting to 100% with MS anyway - there’s no definitive test. (Lumbar punctures are useful to support a working diagnosis and to rule out alternatives, but about 10% of MSers have a negative result so if a neuro is confident it’s MS, there’s little point in doing one.)
Steroids are a personal choice. They work best when taken early, but they don’t always work even then. When they work, they shorten a relapse, but they don’t change the outcome: the symptoms you are left with are the same with or without steroids. Some people respond brilliantly to steroids; some don’t. They can damage your digestive system so should be taken with a protective med like omeprazole. They are a factor in which Tysabri users develop PML (any previous steroid use increases the risk). So a mixed bag. Personally, I hate them and will never have them again unless I am in a very bad way, but I am completely biased because the last lot I had permanently screwed up my digestive system. I have friends who are massive fans of steroids though. We’re all very different!
I Won’t use them again either. All they did was give me bad acne, a raging fury and complete insomnia for a few days. Oh and a foul metallic taste in my mouth which they said would only happen whilst they were being administered by IV but it lasted for days. Catherine
Thanks for the info.
To be honest I’d rather not take the steroids, I never take things like anti-biotics or strong painkillers and the only thing I really take is an Aspirin now n then. Luckily I’m not in any pain at all… just trouble walking and a slowly improving right eye.
I don’t take anything really, either recreational or prescribed, I very rarely drink either.
Does anyone smoke cannabis to help with symptoms?
The strange thing is that I used to smoke small amounts but this episode started when I pretty much stopped smoking it. I do intend to stop smoking altogether but I may hold a little ‘green’ in reserve just in case, it helps me sleep. Like I said, I only smoke very small amounts (at the end of a day) and only if it’s very naturally grown.
I also understand if no-one want to talk about this, I did a search on this forum and it’s never been mentioned before but I have read that it does help people in the short term but has no effect on MS in the long term.
My understanding of medical research into the benefits of “cannabis oids” is that they mask the true symptoms and are therefore detrimental to your health. That’s why it appears beneficial on a short term basis. My experience, through work, is that cannabis, even the smallest amount, smoked on a rare occasion, has an absolutely devastating effect on mental health and can induce the most horrific and potentially devastating, life changing episodes. So I guess you could read between the lines, that I, for one am totally and utterly opposed to its use.
How to reduce it while maintaining a self-employed income is a tricky one mind you. The obvious thing is to charge more and work less. (This is what I did many years ago, but my timing was very lucky so I could get away with it.) Maybe take on a partner so together you can bring in more, but individually do less? What might work will depend on what you do though.