Tomorrow I get the results finally, had an MRI on brain done in June which showed two lesions and inflammation, seen by neuro three weeks later, had MRI on spine…negative…tomorrow results of lumbar and EEG but my neuro has referred me to neurosurgeon for end of the month…before he has even seen me tomorrow and not told me why…he had said at my first review possible ms or vasculitus…so have to wait until tomorrow in the meantime I still have numbness in hip, knee and arm, vertigo…or walking on sand as I call it…feel like I have a bowling ball on my neck…constant foggy head, fatigue, running to loo constantly…limbo may be at an end, but very scared about walking into room tomorrow…dreamt last night about not going…also mentioned something about the white matter in my brain but I can’t recall what he said…last year I was treated for lack of vitamin d and folic acid…the numbness has been going three years now…seizure in March but none since…my neuro has given me tablets for epilepsy and tablets for the dizziness…please has anyone been diagnosed with ms with just two brain lesions and negative other tests…I have worked everyday since I was 16 am now 45 haven’t been able to work last 2 months…sorry for long rant but terrified about tomorrow…so many stories on here about being mis diagnosed etc xxxx
the diagnosis of MS seems like a green light for the medical professionals (the people we look to for answers) to shrug their shoulders!
i have read that some diagnosed with MS have symptoms but no lesions; others with lesions but no symptoms!! anyone of us can fall into either category or somewhere in between!
be strong; face your fears and know that knowledge is power. get every available treatment and option available to you. exhaust every therapist, neurologist and general practitioner you are referred to. take it all!
if you have RRMS take the (perversely) optimistic view that you may get hit by a bus before your next relapse. if you are already relapsing, just labour under the assumption that each new day will come with improvements in your symptoms and thus the start of your remission!
at the end of the day, it is about quality of life. get the drugs to manage the symptoms, get more drugs to alter the course and thus severity of the illness. let the people in white coats argue over what name to give your illness, whilst they give you prescriptions that ensure you are best helped with getting on with this life, the best you can.
THE VERY BEST OF LUCK
Hi Fiona, Just wanted to wish you good luck for tomorrow, make a little list of questions you want to ask or take someone along with you for support. Janet. x
The not knowing is the most frightening part, I think. Once all the facts are known to you I’m sure you will feel more in control.
Whatever is said to you today-remember! you will have the breathing space to leave the appointment and think over/discuss what’s been said with your love ones.
Make sure you ask questions and don’t be afraid to ask the neuro to repeat anything that is not clear to you. Take someone with you if possible.
It really isn’t a good idea to think about people who have been misdiagnosed. That can happen with other conditions and compared with the rest of the country the numbers could be small in comparison.
I fully understand your fears, I too felt that way. Just don’t let it overwhelm you, so that you can’t make full use of your appointment.
The best of luck Fiona!
I was diagnosed after having one MRI and no other tests at all. I really, really hope you have someone to go with you today. If not, I would advise writing down what the neuro says, because you won’t remember otherwise.
Hope you’re OK.
Just read your message. Hope today went ok and you got some answers to your questions.
If you can, post how it went. Fingers crossed for you.
Thanks everyone who responded…lumbar came back clear as did the EEG however on looking at MRI of brain there is more lesions than they initially thought so they are going to wait until February and do another MRI of my brain and spine and another lumbar…also they have found antibodies in my blood so am being referred to a haematologist, seeing a neurosurgeon at end of month toe as two of my discs are nearly touching my spinal cord, also to have bladder checked for urine retention as every time I go to the loo, ten minutes later I feel it is full…he asked me if I had a rash over my body I said no, but when we came out my husband said to me Fiona you have hundreds of pink spots over your torso and legs…they have been there since my 20’s they look like hundreds of pink strawberry birthmarks…I saw my doctor when I was young about them and he said it was just skin pigmentation…does anyone else have this? He also said that after my next MRI and lumbar he will refer me to a neuro who specialises in MS…he says it’s not vasculitus but possible MS…so the limbo remains xxxx
Oh Fiona thanks for update.
What a lot to take in… at least you’re in the system now and are being investigated!! Good news on LP.
Write everything down so next time you see Dr/neuro you don’t forget to mention anything.
Just looked up vasculitis - its an autoimmune immune thing which MS is too.