New and in limbo

Add to favourites Like (0) Get email alertsQuotereply Hi Everyone, I just wanted to say hello and really glad I have signed up to the MS Society page. I have not been well on and off for a long while and just a month ago I had numbness in my face and my Dr sent me straight to A&E, scared and worried sick I went. After a three day stay in hospital along with full MRI, bloods and lumbar puncture I was sent home. My lumbar came back clear and they sent it to London to test for the bands. They suspected a stroke in the first instance because I have a family history but I’m only 37 so I was really frightened but full MRI revealed it was not a stroke, nor tumor or cancer so have to be very thankful for that but I do have legions. Went for follow up couple of weeks ago with Neuro and he said suspecting MS due to episode I have just had and the fact that I have had problems with other things to due with headaches and earache, ringing in the ears and he said I have probably had it for a long while but just got on with things dues to being fobbed off by my old GP. So next step Addenbrokes in Cambridge to see Neuro there for another assessment and see if I can start Beta Interferfon. To be honest I feel really well at the moment appart from getting tired and I have had days since being told where I feel really ok with it and say to myself “I am not going to let this get the better of me” and others where I feel scared to death about what is happening to me, why me?, what if’s and CRY ALOT. Suppose this is normal and everyone goes through it. My neruo did say I may get to Addenbrokes and they may say it’s so mild that I will be told to come back in 6 months for another assessment. Keep hoping like other people have said that I will wake up one morning and it would have all be a bad dream! I have also just been tested for being B12 deficient but that came back ok. Does it get better to deal with when you have a 100% diagnosis and start treatment? it’s just that feeling of not really knowing but my neruo said “if I could take your brain out I would to show you what I mean and I am going to say I’m 95% sure you have MS”. So there you have it, sorry for such a long post . Thanks for reading my epic post, caz x

Hi Caz, and welcome to the forum :slight_smile:

Does it get better to deal with once you’re diagnosed? Yes, mostly, it does. It’s all very scary and new in the beginning, but over time we realise that life isn’t so different and, although some things are harder, it certainly isn’t the end of the world. Of course relapses challenge that attitude, but it’s not often as scary as the very beginning because we know we’ve got through it all before and we very probably will again. We also get better at dealing with symptoms and getting on the right meds (and dose) as well as getting the right support helps a lot. Life with MS honestly can still be good.

Hopefully the Addenbrookes team will sort the diagnosis out for you without too much hassle, but it might be helpful if you take along an outline of the symptoms you’ve had in the past (what, when and how long for) as well as this most recent attack - to be diagnosed with MS you need to have had at least two attacks.

In the meantime, don’t be too hard on yourself: this experience is like being on an emotional roller coaster and no one could possibly keep dry eyes all the time through it! Be kind to yourself, rest when you can and take it one day at a time. It does get easier :slight_smile:

Karen x

Hi Caz

Welcome to the forum

As for getting a diagnosis, it’s a lot to take in at first. It does get easier but it may take time. I think it took me most of the first year to accept it and just get on with life without worrying every day and without going into some kind of meltdown for at least a few minutes!! Now, four years on I have days where I can almost forget about it.

I go to Addenbrooke’s and the team are fantastic. I wasn’t very impressed with some of the neuros at my previous hospital but have yet to find a bad attitude at Addenbrooke’s. I hope you find the experience as positive.

Tracey x

Hi Karen and Tracey, Thank you so much for your messages it’s very reassuring talking to people who have been through it. Somedays I just forget then others I will suddenly think OMG I’ve to MS and it’s like hitting a brick wall. I think I will feel better about it a bit once I have had my appointment at Addenbrokes were I can ask a lot more questions and at least start moving forward, it’s not until the end of July dreading it and looking forward to it all at the same time. A thanks again, made my day :slight_smile: xx