MS Possibly?

[Dozymoo42]

I feel like I am going round in circles with doctors , my DD(26) has been experiencing random symptoms for the last 18 months.But she has really gone downhill in December.

*fatigue
Numbness/ tingling down her right side
Bowel/bladder issues (accidents occasionally)
Right leg completely no feeling for at least a week before Christmas
Burning feeling in right leg now and weakness
Brain fog
Struggling today with her Vision - completely gone in her right eye

She went to A&E before Christmas and they advised it was nerves in her spine causing issues, they got her an emergency appointment with a neurologist who said this is not the case and sent her straight back to A&E.

Numerous visits in December due to headaches/trouble with coordination etc on the final visit before Christmas they admitted that they had diagnosed her incorrectly and that 3 consultants had reviewed her file and believed it to be MS- passed her back to her GP.

I guess my question is do these symptoms ring a bell with anyone? And would deterioration be so fast? Feels like she's getting worse daily. Apologies for the long post !

Did the neurologist not order an MRI scan? Those symptoms do sound very much like MS. Has she had her bloods checked for deficiencies? Vitamin B etc?
If it is MS it's absolutely not the end of the world. I've was diagnosed 13 years ago and the treatments are very effective.

Thank you so much for your reply, the neurologist that she saw was only seeing her for the potential nerve issue in her spine.

The MRI she had was only for the lower part of her spine, we are waiting to be referred again now for the test for MS.

She's had an horrific year as she has been tested for cancer 4 times due to ongoing random symptoms,they thought she had meningitis at one point due to headache and neck stiffness now it seems that could be a symptom also?

she had a CT scan on her brain during one of the tests in July would anything have shown up on that if it was MS? Or can it come on quite quickly?

Yes it sounds very possible. She needs an MRI scan asap to check for brain lesions. A CT scan isn’t detailed enough. It it were me.. I’d go private for a consultation with a neurologist if you can afford it and hopefully they will refer her via NHS for an MRI. Have a look on the MS Society website. It’s very good and really informative. Good luck.

MRI is the gold standard here. She needs one in her brain and full spine.

it can happen quickly if she’s in a big relapse, but treatment can stop any progression and keep her stable.

my friend was diagnosed at around the same age, it was a really scary time.

Thanks again everyone.

We've been in limbo a little with it being Christmas but as things are getting worse she is panicking incase it's something else and she can't understand how fast it's going with new symptoms etc.

We will be back to the docs soon as they are open, the doubt I had was due to her having the brain scan previously and nothing being on it but if it's an MRI that will diagnose it and not CT now that makes sense.

Just at the helpless stage at the minute unfortunately. Glad I've asked on here and I will definitely direct her to the website you suggested.

there could still be a few weeks wait even with an urgent MRI - can you afford private? In my area you can usually get scanned within days - results within 2 days after that for £300 for one area. Itll be more than that for brain and whole spine but at least gets a quick result.

Will have to have a look into it in the new year , we kind of stuck at minute

Hello there, hope yoi don't mind me asking but is your daughter any better? Did she get a diagnosis?

Hi, thank you for asking!
we had a little bit more of a rough time but finally last month after another paralysis episode from the waist down for which she was in hospital for 12 days we got a diagnosis.
A neurologist for Manchester travelled to our town to speak with her and the diagnosis is FND. It really has made a difference to her just knowing that there is a reason behind everything . She has her first appointment with the FND specialist on Monday so we are hoping to know more then. We know it’s not an easy condition to manage and they’ve said it will be multi disciplinary rehab for it be we are on the right path and it’s such a relief!

Thank you for the update. It's great you're getting some answers and I hope that now your on the right path, some treatments/rehabilitation can help improve things. I hope your daughter's meeting went okay last week.