Hi there, I’m new here - my GP has referred me to the site. I was diagnosed with MS two and a half years ago after two bouts of optic neuritis, ten years apart and numbness on my face and scalp in between. Since then I have lived with fatigue, an overactive bladder and eye pain but not much else until a few weeks ago. I’ve had dizzyness, heavy legs, pain in both hands, a creeping feeling on my scalp and pain in my bladder - and I am completely exhausted. My GP thinks it may be a virus and has signed me off for a week; she hasn’t referred me to a neurologist, only a urologist. I don’t have an ms nurse and I don’t really know who to turn to for support. Should I push for a neuro appointment and an MRI scan? Any advice appreciated!
Hi Wither Hills and welcome to the forum
I’m very surprised that you don’t appear to have neurologist? Is that so?
As you are dx with MS you really should see a neuro fairly regularly. Most people see them about once a year, but if there is a sudden increase in symptoms, which you seem to have, you can usually phone and make appointment.
Do you know what type of MS you have? If RRMS, you could be given treatments (DMD’s… Disease Modifying Drugs) to help with symptoms.
Go back to your GP and say you want to see a neuro. GP’s know very little about MS… it needs a specialist with all the latest knowledge about treatments etc.
I don’t think it’s so much an MRI scan that you need as you are already dx… but yes you NEED to see a neuro!
Hi Pat, a neurologist diagnosed me two and a half years ago but then signed me off - I did ask at the time if I could have an annual appointment but he said if I needed to see him again I should be referred again by my GP. I wasn’t very happy but there was nothing I could do - there will no doubt be at least a 13 week wait as there was last time once my GP agrees to refer me.
Thanks so much for your advice Pat - on this site I’ve found the number of the MS nurse at my local hospital - I will give her a call tomorrow.
What a lovely and very unusual name.
Well someone is not doing their job; diagnosing you and then saying goodbye, No way is this adhering to the NICE Guidelines and I suggest you get your GP to do a referral to another Neurologist. http://guidance.nice.org.uk/CG8
Thanks George, I’ve never seen those guidelines - that will make interesting reading - I’ve had no support at all from the NHS but I won’t put it up with it any longer!
Hello and welcome to the site
Has the GP done a test to see if you have a UTI (urinary tract infection)? That kind of thing can send our symptoms nuts, and usually antibiotics sorts everything out.
Viruses also cause what’s caused a “pseudo relapse” - basically what feels exactly like a relapse, but is caused by the virus (or infection, like a UTI). If it is a virus that you have, you will hopefully start to feel better when it goes, but this is not really the sort of thing that a GP should be making a call on so I’m pleased you’ve found a number for your MS nurse - they are generally a MUCH better source of decent info than GPs!
Like the others, I’m not too impressed about your lack of regular contact with a neuro. Smacks of waiting list manipulation and is NOT good practice
One thing that is normally true about living with MS: getting the right meds and support makes the world of difference, but if you don’t ask, you don’t get! So having the right contacts and the right knowledge, as well as being assertive when you need to be, really can pay dividends.
Fingers crossed for a UTI and not a relapse
Hello Karen, the forum has already lifted my spirits! Thank you so much for your comments and helpful advice.
Yes, I had two samples tested and no UTI - so either a virus or a relapse I guess. I just wish I knew how long the symptoms would last but I don’t suppose anyone can tell me that. I’m due back at work on Monday and at the moment I know I won’t be up to it.
I’m also worried because I’m due to go on an adventure holiday to Sri Lanka in January - I booked when I was feeling fit and optimistic. The balance is due in a week’s time. I don’t know whether to pay up or cut my losses and lose my deposit. I have got MS cover but if I have to cancel the insurance company is bound to write to my GP and assume will want to know about my recent medical history. I was so looking forward to it. Has anyone else faced the same dilemma?
Please don’t cancel the holiday! Even if you are still not back to normal by then, I bet there are plenty of nice beaches you can sunbathe on while the others go and get knackered doing the more extreme things - then you can meet up to swap stories in the bar later If this kind of holiday fills you with horror, then why not call the insurance company and ask what the situation is re your cover, i.e. for what reasons would they refuse to pay compensation for having to cancel a holiday because of your MS? If need be, you can tell them you are asking because you currently have a virus which has temporarily exacerbated your symptoms. (This isn’t lying - it’s what you have been advised by your GP!)
Whatever you do, do NOT go back to work too early. It won’t help you recover from a virus or a relapse. So take your time and make sure you are properly better before you risk it.
Thanks so much Karen; I really don’t want to cancel; I’ll be making a few calls tomorrow.
Hello from me aswell.
I’m with Karen on the dont cancel the holiday and the insurance stuff
I can’t believe you were diagnosed and abandonned,make sure you get yourself back into the system as it opens all sorts of doors for you.
At least now you have found us you know there is a support network,made up of people who know the day to day realities of the condition.
Hope you start to feel better soon.
I forgot to mention that as your dx happened and you continued on as usual, did you do the usual house keeping of informing DVLA and your insurance company,and did you look to see if you had critcal illness insurance as ms is something they pay up on…but many have a time limit for claims.
Thanks very much Pip. I phoned my travel insurance co. this morning and explained the situation - I am covered so I am going to pay the balance and hope that I am fit to travel in January.
No, I haven’t done those things - I remember asking the neurologist “who do I need to tell” and he said, very helpfully, “tell who you need to tell”. When you say insurance do you mean car insurance? Will there be an additional premium do you think?
I haven’t got critical illness cover - I couldn’t get it after my first bout of optic neuritis 12 years ago.
If you are dx then you have to tell the DVLA you can download the form.
You then have to tell your car insurance that you have advised DVLA and no by law the can’t increase your premium.
DVLA will write to your doc and then the most common outcome is they send you a restricted licence for 3 yrs,so they can check up again to see if you have deteriorated since last review.
You can still drive while DVLA are dealing with it…which took 3 mnths will me. Unless you drive buses or big things with trailers etc it makes no real difference to everyday driving.
Thanks so much Pip - you’d think someone would tell you these very important pieces of information at dx!
How are you today,and have you been back to your gp about a referral back to neuro?
Hello Pip, how kind of you to ask! Not great today, very heavy legs and weakness in both arms - I couldn’t get an appointment with my GP but will be able to speak her to at the end of surgery today. I think I need another week off work and will be pushing for a referral too.
Found the number of the MS nurses at Southampton General on this site and have left a message for them to call me back.
Found the medical form for the DVLA - thanks for that!
Onwards and upwards as our Poll would say.
I know its hard when your body is dragging you down but there are excellent meds out there to try,and I certainly wouldn’t be going to work.It looks worse on your records to have repeated short abscences than a long one.
I would be telling your gp your ms is out of control and you really need to see a neuro with a view to looking at your treatment plan. You should not of ever been left to get on with it.
Most of us have gps who know diddly squat about ms and are more than happy to pass everything over to the neuro and ms nurse,as you know I am gobsmacked by yours. Its normal for it to take a few days for the ms nurse to get back to you,but when she hears your story I’m sure help will swiftly come your way.
Hi, bit of an update and a request for some advice. The MS nurse has been in touch and wants me to see my GP about a course of steroids. She has recommended 500mg of Methylprednsiolone (Medrone) for 5 days. Has anyone had any experience of steroids? Apparently the side effects can be unpleasant.
Any comments appreciated. Thanks.