Just some information/advise please

Hi there

My daughter, she’s 21, has an MRI scan on 16th June and an appointment at the Neuro clinic on 20th and the rest of the family are due to go on holiday on 17th. No one has said anything about her having MS, but after having done a little research, which I know is not always a good thing, I think this may be what the hospital suspects. She only went to Specsavers for an eye test, but couldn’t see anything out of her right eye, and they sent her to the eye hospital the same day. After looking at her eye, the took bloods and sent her for a chest X-ray, whilst also refering her for the MRI scan.

Now as I said, no one has actually told her why she needs these test done, and the Neuro clinic was never mention, but once I started to look on the good old t’internet, and came across the MS Society, I have found that in the last 3 months she has had other symptons, that at the time I never thought anything of, but now I don’t know if I’m putting 2+2 together and getting 5.

The first thing she had was pins and needles and numbness in her hand, I think it was also her right hand, which despite me keep telling her to go to the doctors she didn’t. We thought it was circulation. Then the loss of sight in her eye. The next thing is her leg has started to give way. She was at a festival the day before this started and she thought it was something to do with that, being stood up all day, but that was over a fortnight ago, and it is still troubling her.

I’ve not mentioned my concerns to her and if she has any concerns she’s not mentioned them to me or her dad, and as we are going away and she is staying at home with her sister, I’m now worrying that we shouldn’t be leaving her. My sister, who is in health care, has also offered to go with her.

I think I would just like some advise please, as this is all completely new to us.

Thanks

Hi Lisa, how worrying for you. It’s so hard of course for anyone to say what might be going on. Yes, her symptoms do sound MS-like as you already know, but there are a whole bunch of conditions that can have similar symptoms. Having an MRI and seeing a neuro is exactly the right thing to do, so she is absolutely on the right track.

I think you are right in not mentioning your concerns to her at this stage. IF (and it really is ‘IF’) it is MS they might be able to diagnose from the MRI scan… but, as you have probably realised from reading posts on here… it often takes much longer to to dx. They might want to monitor her for some time to see how and if things change or progress. They might want to do a lumbar puncture. In some cases, where there are very evident brain lesions, they can dx from the MRI scan and her symptoms.

In terms of you being on holiday, I think I would say it depends on how close she is to her sister and her aunt. IF (‘IF’ again) they do dx MS or tell her it ‘might be MS’, will she have the support she needs without you there? If she’s close to her aunt, I think I would say you should take her up on her offer. She’s older and works in healthcare so could, I think, offer more support and practical advice. Your daughter should have someone with her when she sees the neuro… apart from anything else, it helps to remember the information given.

I really wish I could say ‘it doesn’t sound at all like MS so don’t worry’, but as you’ve already realised, it does sound like one possibility. Of course, although hard to realise this when you’re first faced with this possibility, MS is NOT the end of the world. So many people with MS continue working, have children, continue being fully mobile, drive, and enjoy a full and active life… just having to make a few adjustments sometimes for their MS. Even when MS does mean making some much bigger adjustments, people do adjust and live happy lives even if it’s not the life they had planned for.

Come back and let us know what happens. Plenty of help and support on here IF your daughter should need it.

Wishing you and your daughter well,

Pat x

Hi

This may or may not be MS, the hospital are exploring all possibilities.

It’s a difficult one but it may cause unecessary alarm for your daughter if you don’t go on holiday.

If your sister is willing and able to go to the appointment with her, that may be the best solution.

This is one of the most difficult times, the uncertainty phase. It does get better once you know what you are dealing with.

It sounds like your daughter has a loving and supportive family, that is so important regardless of what the appointment on the 20th brings

Good Luck to you all!