Wasn’t expecting to get diagnosed today was expecting him to say come if you display more symptoms as my doctor said there was not change to my mri.
He rang up for my results from lumbar and said there was something there can’t remember what excatly banding I think and then said his diagnosis would be inflamation of the nervous system blah blah cant remember multiple sclerosis given my symptoms and my numbness that ive had for over 5 months and the lumbar result would all point to multiple sclerosis and he would put me in touch with the ms nurses.
Wasn’t expecting this as I only have 1 leision but haven’t had spine and neck checked and I’ve had 2 separate flare up’s, dont think I will fully take it in till its in writting, in one way I’m glad i didn’t get fobbed off but it gets you thinking about future he did say it seems mild but I cant tell you thats it will stay that way.
I didn’t get any questions ready as I was shocked a bit he said to come back in 3 months time with any questions as I would proberly think of some afterwards.
Hi Mel, so sorry to hear you had such a bolt out of the blue!
I’m assuming it’s your GP that told you the news which is a bit surprising as it’s usually the neuro that gives the news.
The ‘banding’ found in your spinal fluid means that cells that are usually only found in the blood stream have been at work in your nervous system. This is a very simple explanation… sorry, I’m not a medical person… but it is something they look for when trying to decide if you have MS.
It is also very surprising that they are saying MS when you only appear to have one lesion. Usually they look for more than one lesion separated in space and time… in other words, lesions not in the same part of the brain and that have appeared at different times.
Am I right in thinking that it is the GP who has given you this news? If this is the case, you need to request to see the neuro asap to make sure that the MS dx is correct. Sorry, I don’t want to give you false hope here… the LP result would normally mean MS but it’s the one lesion that seems strange to me.
Our wonderful Karen (Rizzo) will be able to confirm if I’m right here… and I might be completely wrong.
However, if it is MS then you need to give yourself some time to get used to the dx. It’s a bit of a rollercoaster at first, but it does become to feel less shocking after a while (I promise you)… and as you will know from this forum, MS is certainly not the end of the world. It is different for everyone of course but many many MSers continue to work full-time, have relationships and sex, have babies, drive cars, etc etc etc. Bear these things in mind.
So give yourself time, talk about it with someone if you can, phone the helpline on here (number at bottom of screen) if you have nobody to talk to, be gentle with yourself, and remember… ‘one day at a time’.
No neuro told me today it’s the fourth time I seen him the time before I was really poorly and he could see symptoms and didnt pass alot of tests on examination, yer I was thinking that with leisions in dif areas from reading on here so not really taking it in till it’s in writting and I thought they have meetings to decide things before they see you. But need to get some questions together before next time I see him so far I got - do i need to notify dvla then what vitamins or supplyments would he advise and would he think a stricter diet would help.
I’m with Pat on the one lesion thing - it’s pretty unusual to be diagnosed without more than one lesion, but I guess your symptoms are specific enough to be able to do without the spinal scan. (Spinal scans aren’t very reliable anyway.)
The bands are called oligoclonal bands. These are antibodies which show that the immune system has been fighting something. When we have an LP done, they also take a blood sample. Then they test the cerebrospinal fluid taken during the lumbar puncture and the blood sample for the antibodies. If they are found in the blood sample AND the CSF, then it shows that the immune system has been active throughout your whole body (this is called “systemic”). If they are only found in the CSF then the fight’s only been in the central nervous system. About 90% of MSers have oligoclonal bands in their CSF but not in their blood.
As far as questions go, why not start making a list - I bet loads occur to you over the next couple of weeks. One thing that is very important is to ask about an MS nurse. They are the day to day contact for MSers and can offer advice and make referrals without you having to wait to see a neuro.
This is likely to hit you like a ton of bricks at some point It’s perfectly normal to feel like you’re on an emotional rollercoaster so try and take it one day at a time.
Yeah he said he would refer me to ms nurse he did go out and ask if she was there but she wasnt I think he could see I was in shock just didnt expect it as there is only one lesion, I thought he would just say go back have neck and spine scaned and then make another appointment but I near enough dragged myself in there last time I’ve seen him 4 times in a period of 7 months so I think he has good picture of how I’ve been. But saying that I want to see it in writting first as I have seen on here that they sometimes go back on what they say. I was under the impresion that they have to decide it in a mdt sort of thing thats what my gp said they do.
Coming out of there my legs went to jelly thought I was gonna colapse thank god I didn’t and I was shaking. I’m ok with 2 children and a full time job you got to just try and get on with it I would never get upset in front of the children because that upsets them to yeah I expect I will when I’m alone as I don’t like to show my emotional side infront of people.
The MDT thing doesn’t apply all the time - I guess it depends on the neuro and how tricky the case is. Good idea to wait for the letter though.
The kids may well pick up more than you want them to so please do consider telling them. The MS Trust do some excellent booklets for kids that may help.
My youngest is 4 don’t think she would understand yet my eldest who is 11 I’ve talked to as he was looking after me in summer he didn’t want to go out he made me lunch and drinks and running errands while husband was in work and explained what it could be then but then I was quite horrified that he told some children in his new school when he went back that I had it so had to have another talk with him and his teacher then so I think I’m just gonna leave it till he asks.
He is quite resilient like myself, I’ll have a look the neuro said he was gonna give me something to read, is there any books that you would recomend for myself also.
Hi Mel Sorry for your shock. It does take some time to get your head around such a diagnosis. Make sure you lean on your friends and family for support. We are all here to moan at so please do. We are happy to help. As Karen has said please consider telling your children about what is happening. When I was diagnosed last year I told my children ( the youngest was 6 ) and they coped really well. Children are very resilient and I think it helps the whole family that they know. The booklets that Karen recommended are excellent and are free! Take care of yourself, Teresa xx
mel, i know its a shock, like many others on here i’ve been through it, i can’t claim to be an expert, i was dx 2 months ago, on ms but i can tell you life does go on. in time you’ll realise that life is different from how you expected it to turn out but it’s far from over. and i havent told you i’m sorry because i got sick to death of people telling me they were sorry, i was still me, and you are still you, still the same people. take some time to get used to the idea then get out, enjoy life, it’s only ms not a death sentence
