I had been having mulitple migraines over the last few months and feeling tired. I initially went to the doctors as I had 10 migraines in 2 weeks and thought I had perimenopause. The doctor sent me for a MRI as a precaution and the results were back within a couple of hours stating multiple demyelinations in brain and c spine. The GP said it was likely MS. I have had a second MRI for full spine and orbits. Another lesion was found in C spine but otherwise clear. I have my first neurology appointment in a couple of weeks. Im expecting to need a lumbar puncture. Im really confused and scared of whats going to happen in the future.
1 Like
Hi Jenna (?) I well remember the scary time 18 years ago when an MRI showed āquite a few lesionsā in my brain. It was a very unsettling time when my world seemed to have turned on its head.
If itās any reassurance to you, then all that was 18 years ago followed a short while later by starting a Disease Modifying Treatment which in my case was Avonex, - one of the very few treatments available at the time. 18 years later then I do have some problems walking for more than 10-14 minutes and sometimes have to rush to the loo but Iām not doing too badly. One thing that really has changed in those 18 years is the number and effectiveness of Disease Modifying Treatments I.e a greater number of treatments and increases in effectiveness.
When you see the neurologist itās probably best to take someone and /or a pen and paper with you along with a note of symptoms you have had and when. Like me, many people on the forum remark on how that first appointment is a bit of a confusing blur and they leave the appointment not remembering everything that was said by either the neurologist or themselves
My best wishes to you
Iām so sorry for what youāre going through, but this is a good place Full of good people and itās the perfect place to empty all of your worries out.
The good thing is that they are trying to get to the bottom of it all for you. If it does turn out to be MS the important thing is to start what they call disease modifying therapy as soon as possible. Most health authorities these days have got an MS team made up of consultants in various disciplines and specialist nurses. The nurses are worth their weight in gold, and a fantastic support with the physical things and mental stuff.
Unfortunately itās almost impossible to get a prognosis, when I was diagnosed I asked the consultant what type of ms I had he just said weāll know in about 10 years when we look back. The different types of treatments out there are incredible, and they really can prevent a lot of the progression that would happen without any treatment. Until youāve got the diagnosis and treatment plan itās a bit like being in freefall wondering if the parachutes are going to open, so what youāre feeling isnāt unusual. I think Iād suggest starting to write down what your questions are about the condition, the treatments, and the future and then once you know what questions youāve got you could try to start looking for the answers. The ms society website is a vast repository of information, these forums are great for browsing through and looking at what other people have been asking (there really is no such thing as a stupid question), the MS trust website is also bloody good particularly when it comes to looking at disease modifying therapy, Twitter used to be phenomenal for finding a network of people with MS but a lot are moving over to blue sky, the ms society helpline is invaluable and they really are supportive and great listeners, then over on Facebook thereās often local support groups thatās supported by the MS Society.
Getting your head around it is the biggest challenge youāll have I think, and the more you find out the more you realise that you donāt know.
Try not to let it get in the way of enjoying the festivities over the holiday period, my mantra has always been āif this is as bad as it gets, then Iām fineā. Take all the support you can and donāt forget that your future is still there, so you donāt need to give up hope.
Take care
Hi,
Itās only natural that you would feel confused and scared. If itās any comfort, even if you do have MS, those feelings are unlikely to be so bad for ever - time helps.
On the lumbar puncture, I know it sounds nasty, but if they do ask for that, itās not something to worry about. I have posted my experience somewhere on here, the procedure itself was virtually painless.
They may also do some blood tests to rule out other conditions.
So what if it is MS-related?
Well, your migraines themselves are probably not MS symptoms - it sounds like they are concerned because of the MRI. I was originally diagnosed after MRIs for head pains (probably unrelated). Since Iād had no MS symptoms, I was diagnosed with RIS āradiologically isolated symptomā.
With this diagnosis, you may go on to get symptoms and an MS diagnosis, or you may not. At this point, my MRI was less clear than yours so I was sent for a lumbar puncture, which confirmed the RIS diagnosis.
There is some good news for you here: If you catch it prior to any symptoms, you should (I think) be able to start treatment immediately. This might reduce the chance of RIS turning into MS. Or if you get MS, help improve the course of disease. In your shoes, Iād push to go on whatever ādisease modifying treatmentā they can give you. Early intervention seems to work best.
Waiting to get from one appointment to the next is really hard. But plenty of support for you here.