Just been diagnosed this week. Feels strange. On the one hand it is a relief to have a diagnosis that explains several years of vague symptoms but on the other hand I just want to bury my head in the sand and wish I Didn’t know.
i totally understand where you are coming from.
unfortunately burying your head in the sand is not practical.
you’d get sand in your eyes.
you should be allocated an ms nurse and offered one of the DMDs.
phone the neuro’s secretary and ask if these will be forthcoming.
it ain’t that bad really.
we have a fantastic community on here.
Thanks for that.
I have an allocated nurse and will be exploring treatment options with her.
I know it is not the end of the world but just a massive side swipe!
Your reaction to the diagnosis is not unusual. Many people feel both of those things, utter relief that at last they have an answer to their months or years of symptoms and sheer horror at the thought that MS has moved in to your life and is here to stay.
Burying your head is not likely to help much. (I like Caroles comment about the sand in your eyes!) Learning more about MS is a good plan though. Try looking at the tab at the top of this page marked About MS.
Then you need to figure out which variety of MS you have. Your neurologist may have already told you what they feel you have. The most common is relapsing remitting (RRM). So if your symptoms have come in waves which have then either completely or partially got better, it’s likely that this is what you have. The good news about that is that there are disease modifying drugs (DMDs) which aim to reduce the number and severity of relapses. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid This will help to familiarise you with the different types. You aren’t likely to be given a complete free choice as to which drug you have, there’s likely to be a few from which you can decide what fits in best with your life.
You could however be diagnosed with either secondary or primary progressive MS. This would be where your symptoms don’t come and go, instead they gradually, or for the very unlucky, quickly, get worse as time goes on. Secondary Progressive (SPMS) would be following a period of time whilst you were relapsing remitting. Primary Progressive (PPMS) would be where you have never had a period of time when your symptoms remitted. The bad news about progressive MS is that there are no DMDs.
Once you get to see an MS nurse, you will at least get some guidance through the maze that is MS.
Best of luck. Keep coming back here when you have questions, worries, concerns, or just understanding. We’ll try to help.
So, am nearly two weeks post diagnosis. Am pretty fed up of talking about it but have really valued the overwhelming support from friends and family. Still waiting for contact from my allocated specialist nurse to discuss treatment options. Every time I look at the information I have been given, it stresses me out. I feel I should be having a complete meltdown but still feeling pretty numb. Am so grateful for this site so I can just vent random ramblings. I know there are no answers.
Take time to let the diagnosis settle Ping. Everyone goes through some variety of emotional reaction to being told they have MS. And all of a sudden you have a whole new load of ‘stuff’ to get your head around.
Try not to worry too much. Random ramblings are in part what this site is for. To allow you the space and freedom to explore what it is you feel together with some virtual ‘friends’ who understand what it feels like.
Hi Ping I am in the same position. Just found out on Monday they believe I have RRMS. I’m waiting to hear from an ms nurse and will be getting the dmd which I inject myself every other week I think. Dont know how long it will be though. I know exactly that feeling, or lack of. I just don’t know how or what I feel really. At least the ball is rolling for us I guess. All the best, Lynz x
when i read the posts of the very newly diagnosed it takes me back to october 2008 when i was diagnosed.
reading your stories really impresses me for the strength you are showing.
stay strong my warriors, be brave and be victorious.
we’re all in this together.
So, I was official diagnosed a month ago. But been through 2 years of ongoing symptoms and MRI’s.
I have loss of sensation and numbness/tingling in hands and feet. Severe fatigue. Used to love pottering about in garden, but now can barely do that for 15min before I need to rest. And not being able to do little things that I used to take for granted with my hands is so frustrating. Tying shoelaces, doing dishes, washing and hanging up clothes, even this typing on PC tiring.
I know what you mean about relief Ping. I was glad to have a definitive answer. Have been off work for 8 months, and am unable to go back and do what I did there. So am trying to get IHR sorted, but work is not being very cooperative. If anyone else has experience of having to quit work and IHR please give me a shout.
I am also (unpaid)carer for my mother who has had 2 hip replacements and has mobility problems. So just trying to sort things out and trying to get some semblance of life back together.
I agree. Excellent post Carole. There is some tremendous courage and strength being shown by so many of your newly diagnosed. You are indeed warriors.
Your local Citizen’s Advice Bureau can help there.
Have you checked to see if you are eligible for Carer’s Allowance?
I was diagnosed last week after 7 very uncertain months. My anthem at the moment is Sia and ‘Flames’. Have a listen. Listening to it a few times each day is getting me through. ‘One foot in front of the other, just keep moving. Look for the strength within today, but just keep moving.’ The words just really seem to help me be strong at the moment.
Ping, I know those feelings well. I was diagnosed at the beginning of August this year, my anxiety got so out of hand I ended up up on (mild) antidepressants. However, 2 months on I’ve decided ‘it is what it is’ and am feeling much more positive. I’m ready to tackle this head on. It might not feel like it just now, but the haze will lift. Just remember you’re not alone in this.