Hi, I started getting lots of weird nerve problems back in January. I visited my GP and he sent me for MRI scans. These were done very quickly. A specialist looked at my scans and wrote in a letter to my GP “I agree it is probable she has an inflammatory syndrome in her cord and MS is a differential diagnosis” there is addendum from a radiologist who agrees due to T2/T3 cord demyelination and 5 brain lesions. I was given a Neurology appointment at the end of October, which was later cancelled because if COVID. Since then I have no information, I’ve rung my doctor, he told me to wait, unless I go blind, lose control of my bowels or lose the use of my legs, in which case I go to A&E. The only information I have about this disease is from the internet, or from colleagues who “know someone”. None of the stories are ever good. It’s causing me so much anxiety, I am scared, I don’t know if I need to be changing anything, if there’s something I can do to help, I don’t know what to look for or when to call a doctor. I’m just sat here waiting to blind… Is anyone else in this situation, can anyone lend me some advice, how worried do I need to be that I probably have MS and have just been ignored for 6 months? Just talking to newly diagnosed people might help me. Thanks you.
You sound so worried and anxious that I couldn’t scroll past your post. I am not yet diagnosed (have been going through various tests, MRI and lumbar puncture) I am currently awaiting the result of a lumber puncture. When I had my first appointment with the neurologist back in February. His advice to me was to try to limit stress (easier said than done!), take vitamin D3 (I am Vitamin D deficient), carry on with the exercise and yoga and meditation that I had been doing previously. At the time I had a diagnosis of CIS (Clinically Isolated Syndrome) I had an “attack” of optic neuritis, which caused sight lose in my left eye in September 2019. During lockdown the other eye did the same thing. I want to reassure you and say, I still have my sight! I didn’t go blind! Although I was terrified that was what was happening. I regained most of my sight in both eyes, colours are slightly off in the right eye. Although my eye sight was really bad (could read the top line of an eye test and not much else) It was only one eye at a time and both eyes recovered. So even if you do lose some sight, chances are, it will come back!
We all have good days and bad days - But the people on these forums are such a support. You have come to the right place!
Try to breath and stay calm - One thing I have learned, these things take a LONG OLD time! I hope that helps…
Hi Sj, it is very odd how you have been given an appointment, then a cancellation and no follow up.
I suggest you ring your GP and tell them what
s happened. Ask them to try to find out whats what. It is very unfair how you have been left dangling…especially as MS has been mentioned.
Myself and many other MSers have never had any vision problems…so dont take it for granted that it will happen to you. Plus vision does return after an attack of optic nerve inflammation…hope that info helps.
In your opening post you write: ‘The only information I have about this disease is from the internet, or from colleagues who “know someone”. None of the stories are ever good.’
Please please don’t listen to those stories, the people telling them may mean well but they are misguided. Information about MS, or any other medical condition, should preferably come from your consultant or specialist nurse if you have one. If they are not available to you then this MS Society site is an excellent place as is the MS Trust site; try to ignore the other 45 million references that Dr Google will offer you. (Yes, I’ve just searched and there’s 45,000,000 - you’d be up all night!).
Members of this forum can offer good advice and share their experiences, as have the above posters. Between us we have a wealth of experience, yet we still sometimes have our own questions.
Btw, I think your GP was being a bit dramatic, if you do have MS you may never get any of those three symptoms, it was a bit thoughtless of him/her to put it quite so bluntly. I would say, if you get a new symptom causing you concern that would be the time to go to the hospital.
I can understand you feeling so anxious; if you need a little reassurance you could always call the MS Soc Helpline 0808 800 800 Here’s a link to the page with all the details… https://www.mssociety.org.uk/care-and-support/ms-helpline
I quite agree it sounds like your GP has caused you unnecessary worry with their list of things to take you to A&E. Chances are none of those things will happen to you at any point, let alone in the next few weeks while you wait for an appointment. And honestly, would anyone sit at home ignoring such symptoms anyway? It goes without saying that you go to A&E if one of those things happens, it really didn’t need pointing out.
I am newly diagnosed. I’m realistic about the diagnosis but hopeful at the same time. I have annoying symptoms I have to put up with but nothing that stops me doing anything I want to do. I have several friends and colleagues with various ongoing health issues, many of which affect their day to day lives more than my MS has affected me so far. So try not to think of it as the end of the world. For every scary story there is a positive one to be found and what will or won’t happen to you is anyone’s guess so try not to overthink it (easier said than done I know).
I would chase up your appointment. Knowing what communication in the nhs can be like I wouldn’t bank on someone getting in contact with you - you will probably need to get on their case and point out that you need a new appointment. They should be able to offer a phone consultation at least.
Good luck xx