I have been having symptoms for around three years now. I have had several advice and guidance letters bounced back by the neurologist (I am in Newcastle upon tyne, uk). Recently I am having a phase where the symptoms are worse again , and yet another letter has been put in. I feel convinced it is MS whilst at the same time absolutely terrified that it is. My first job as a career involved looking after people with late stage progressive MS so this is what I imagine my life would be like. I’m terrified everyone will leave, that I won’t be able to work, that I won’t be able to enjoy life anymore. I feel incredibly alone with all these worries. Everyone around me seems to think it is just anxiety, I do have anxiety but I don’t think it is just that.
I’ve been wondering about going private as even if this advice and guidance letter does result in an appointment I don’t know how I can cope with waiting.
Any advice would be amazing. Or if anyone could help with the question, can you live a good life still with MS or would this be the end
Lots of people here know, it can take a lot of effort to be taken seriously by medical professionals and then work through the tests to rule out anything else that may be causing your symptoms before a dx of MS can be made. Many of us have had our symptoms written off as anxiety amongst other things.
Make sure you have ruled out vitamin deficiencies - B12 can cause a lot of similar symptoms; and thyroid issues - there’s a long list of things with similar symptoms to MS.
Keep a symptom diary, what/when/how long for - its useful to remind you when you visit the GP/Neurologist with your top 5 aggravating symptoms.
Every case of MS is different - the MS Society’s information guides can explain the various forms better than I can; but MS is not a death sentence, it is not the end. Your view of the condition may be clouded by your experience of working with late stage progressive/aggressive MS. You don’t say how long ago that was; but more and more drugs/therapies are being developed to tackle MS and keep PwMS more able for longer.
Can someone with MS still live a good life - Yes, they can, it is amazing how we are able to adapt as and when necessary.
I have MS (possibly/probably started 40 + years ago with optic neuritis) and I am working towards getting my second degree Black Belt in Taekwon’do; I hold down a full time job; I’ve been married for 30 years; I travel when I can - takes a bit of planning and saving up but its worth it; I can drive; work in the garden etc. I know I will have to slow down on various activities in due course, but until I have to, I will continue to live my life as best I can.
I think many HCPs have a particularly vivid holy horror of MS for exactly that reason. You saw the worst of it at an impressionable age and those images stuck.
MS is still life-changing terrible news - no change there - and progress with treatment for progressive disease particularly is miserably slow. But RRMS is less of a horror than if was for many, and maybe if those folks you saw had been born later, it would have taken them longer to get to the point that you saw, if they got there at all. Even if you have MS, that does not mean it will be their MS.
Thank you so much for your reply, and for giving me some hope that there would still be life left to live.
The care job were around 6 years ago and the people were probably late 40s/ 50. It’s good to hear there’s some advancements in treatment.
Have you got any advice on how to get medical professionals to take you seriously? I feel that i do need to see a neurologist, however getting to see one is proving very difficult.
I feel your pain. I think I’m in a similar boat as you.
Six years ago I had an operation for carpal tunnel, even though the results were inconsistent, the doctor thought it would be good to have a preventative operation.
As well as other wee symptoms here and there, but nothing extreme.
Now, I have tingles/burning feeling in the left side of my face. My arm is back to feeling sore and having shooting pains, but the worst is the woozy feeling. I have to stop walking sometimes cause I feel like I’m going to fall. The GP put an emergency referral with a neurologist on the 5th of April, and gave me folic acid cause I’m low in iron.
But part of me thinks I should maybe got o A&E…
Hello. A quick reply to your question ‘can you have a good life still with MS?’.
I hope the following helps a little . I know everyone experiences of MS is different but here is my experience.
I was diagnosed some 18 years ago in my early 50s -Relapsing Remitting MS and apparently a lot of lesions . Over the years since diagnosis I’ve, most important of all, got married (my wife to be was with me when diagnosed and in fact was the nurse who diagnosed optic neuritis and sent me off for an MRI which resulted in the diagnosis of MS). Since then holidayed in Canaries, Azores, Channel Isles, Hebrides, Shetland, Orkney and trip by sea around Svalbard. I’ve also fully refitted the bathroom, relaid some roof ridge tiles, with my wife redone / redesigned quite a lot of the garden.
MS is now getting worse. I can still walk but have started using a stick for anything more than 100yds or so and tend to use a small folding mobility scooter for e.g getting around town or yesterday we went a couple of Km around the local RSPB reserve. Today I was in the garden dismantling and trying to repair a wooden swing bench ( going to need some new wood!).
So for me , yes I’ve had a good life these past 18 years. MS is getting worse and worries me a little / gets me down a bit but life is still good.
Being able to have a clear list of the top 5 symptoms that have the most impact, and be able to say that over the past xx number of weeks, you have had the following symptoms, that lasted for xx amount of time and had this particular effect on you is essential in any and all meetings with medical professionals.
Your GP should be able to sort out blood tests for most things that might cause similar symptoms, Vitamin Deficiencies, Thyroid etc. It may be something that is easily rectified and not as difficult as MS to diagnose/treat. Stick with it and don’t back down on getting tests/answers.
The GP can also refer you to Neurology if bloods and GP level tests don’t get to teh bottom of it - keep at them until you get a referral; even with referral it will probably take some time for a Neurology appointment to come through.
Your GP can refer you to a private Neurologist (who may, if necessary) refer you into the NHS system - a lot of Neurologists work both NHS & Private, so you could end up starting private and continuing with the same Neuro in the NHS.
Stick with it, and don’t back down on the need to be seen by Neurology; stick with it once you are seen by Neurology to get to the bottom of whatever is causing your symptoms. If MS is definitely ruled out, they can refer you to other specialisms to help out.
Hardest of all, don’t let anyone gaslight you - you know that something is off and you need to get to the bottom of it.