my names Dave and i have had optic neuritis at least twicce leading to an eventual mri confirming ms.
that was last year and some,
this last 3 months however i have lost my balance i suffer severe fsatigue i cant walk straignt - my legs hurt - my left arm is almost numb - and my speech keeps going off or i keep loosing words.
im a manager of a small company and im very worried i cant do it any more - i just has my mri result and theres one inflamed lesion looks like size of a 2 pound coin or bigger.
i also have the worst back pain i can describe and i dont even know if its related.
im waiting for a letter from an ms nurse that my neurologist has arranged.
im scared… my wife understands but i dont think she understands how severe my symptoms are, oh and i keep getting double vision!
hope this new p[ost is allowed - some forums frown on new posts so sorry if i broke the rules - if so may be a moderator could move it.
anyway im definately relapsing remiting but i dont know how long to expect this to last , im unmedicated and in so much pain but im back to work monday having only been signed off for one week… any ideas anyone ?
Hi Dave and welcome to the forum. Your not breaking any rules that I’m aware of so don’t worry! Sorry to hear you have become a member of the MS club. If you are in a lot of pain I would recommend seeing your GP, there are drugs out there to help us manage our symptoms so you shouldn’t have to suffer on silently. Relapses vary greatly in length and severity, there are no definites I’m afraid. Just have to learn to listen to your body and do what you feel you can. It’s hard for loved ones to understand how difficult living with ms on a daily basis is, information can help though. The MS Society and trust do lots of booklets to help explain ms to family and friends. Also make sure your honest with each other, she can’t understand if you are not upfront about how much your struggling. Regarding work, maybe speak to your GP if you feel your not ready to return or your HR department? Don’t do more than you can, get some help with the pain and hopefully things will improve for you soon. Best of luck. Laura
Because MS gets its feelers into every aspect of life - health, family, relationships, work, money, duties and commitments, future planning etc etc - it can sometimes feel that the problems are coming at us from all directions. It does sound a bit as though you are having one of those moments; I really feel for you. It is filtered word scary, as you say.
Might it help to think in terms of identifying the things that are (potentially) easiest to fix? (If you have been through this a million times - and I am sure that you have! - my apologies for trying to teach granny…) If you can get a handle on the fixable things, that frees up some thinking space for finding the best way to manage what isn’t fixable. Getting to the root cause of the back pain would be a good start. As I expect you have found already, having MS can make it particularly difficult to pin down what is neurological and what isn’t. Specialist doctors are notoriously bad at communicating across specialism boundaries. But time and patience (yours) spent on getting to the bottom of it could be time well spent.
The only other thing I would say is that your wife has her own road to travel when coming to terms with your dx. A very, very common reaction from loved ones is for them to pretend that all is well and it is all right really. Another common reaction is to catastrophize and rush around tearing hair out and wailing that their spouse is going to be an invalid in a fortnight and you will all be out on the streets and boiling up gravel for soup. At least you are spared that one, by the sound of it, so be thankful for small mercies! (Sometimes, confusingly, it can alternate between the two, so you’re not out of the woods yet…) Seriously, though, it is very usual for people with MS to feel that their spouse is playing things down - if only for their own psychological protection - and that can leave a person feeling very unsupported by the very person whose support matters most. Just give it tims and try not to let it hurt you. This is difficult stuff for everyone. It does not mean that she doesn’t believe you - more likely that she just wishes it were not true (as do you, of course).
Good luck with the MS nurse. Will you be discussing disease modifying treatments? I hope so. You should also be able to get advice on medication to help with the symptoms you have already, if you have had no joy from the GP. Most GPs are not very clued up about MS, and they do not all go to much trouble to remedy that. I hope you have a good GP - they are a real blessing for a person with MS. You might well need to chase up appointments and keep gently chivvying away if things are taking too long. Patience is not a virtue when trying to extract appointments from the NHS.
