I was wondering if anyone could help, around 8 weeks ago I started getting neck pain which was then followed by a tingling and then numbness if my left hand (although mainly my little finger) I was refered to a neurologist who originally thought I had a trap nerve in my neck. He ran some tests - a nerve studies test which came back clear and an MRI scan - unfortunately this has come back showing some swelling in my brain. The doctor said it wasn’t very big and nothing to worry about as he thinks it was caused by an infection but to be honest I had a bit of a cry when he told me and I didn’t ask any questions. He has prescribed me some prayabulin and ran some tests to eliminate vit B12 def, and arthritus and told me to go back in 3 weeks and he will repeat an MRI in 3 months to see if swelling has subsided. I am still suffering with numb little finger, very stiff neck and intense burning sensation on neck and lower head - does anyone know if these symptoms combined with brain swelling sound like possible MS?
I really appriciate any advice/information anyone has
It would be very difficult to say as many of us know that MS is very difficult to diagnose and can take a really long time.
The general rule of thumb is that you need to have two separate attacks (lesions/areas of inflammation) in two separate parts of your nervous system with at least a month between them. it is difficult to comment if ‘swelling’ is the same as a lesion, as i wouldn’t associate brain swelling as a lesion, but different doctors may use different words to explain things to a patient. if this is diagnosed as an ‘attack’, most neurologists wouldn’t diagnose MS alone based on one attack but observe you for a period of time and repeat MRI scans and do other tests.
sorry i can’t be more helpful, most of us are people who have MS or care for people with it. perhaps it is worth writing down a list of questions to take to your neurologist the next time you see them, as i know full well how frustrating it can be to come away from an appointment with lots of unanswered questions.
As already said, MS is only diagnosed when someone has had at least two attacks. The main reason for this is that there are actually quite a lot of things that can cause a one off attack of MS-like symptoms and these patients never develop MS. Given that the neurologist thinks yours has been caused by an infection, the chances are very good that you have had one of these one-off things and it’s not MS at all. That also means that the chances are very good that your symptoms will gradually get better.
Do take a list of questions with you when you see the neuro. And try and take someone with you too - an extra pair of eyes and ears is really helpful for remembering what was said.
Thank you so much for your help and advice, normally I would have had questions etc ready but I was under the impression I had a trapped nerve so being told I had swelling on my brain was a complete shock. My husband is coming with me for my follow up in two weeks and hopefully I will learn more then x
I have just had a call from the nerologist saying that my blood tests have shown a vit D deficiancy and when I asked if that could be related to the swelling in my brain that he mentioned at the last appointment he said not quite swelling more so inflammation or scarring, I also mentioned that the praybulin seems to be causing some mild twiching in my muscles and he said that is unlikely to be a side affect of the medication and he has infact told me to double the dosage to 100mg twice a day. Now I am feeling very upset and worried and scared I think it sounds like I definately have MS - has anyone else had similar symptoms to me x
Hi, I know it’s distressing when going through the dx process but you must try to stay calm because if it is ms then stress will not help. Try not to second guess what the neuro is going to tell you as they will come to a conclusion when the time is right. I know that is very difficult as I was in your position this time last year and without the benefit of Rizzo and others I couldn’t have gotten through it. The one thing I will share with you though is that if you do have ms then you learn to adapt. You are still the same person, but you may just have to do things a little differently. I’m not trying to make light of what your going through I know how bad it is, but there are other things a lot worse than ms. Please let us know how you get on and if you want to ask anything personal that’s fine by me, Chis
Thanks Chris, I know your right it was just a bit of a shock it has kind of come from nowhere 7 weeks ago I was on maternity leave with no history of any problems of this nature and then after just a week back at work I started to get a sore neck and then the other symptoms followed… doesn’t help that that I am a complete control freak by nature and things feel completely out of control at the minute. I worry about my two boys who are very young whether this is MS or something else.
I will keep in touch and I am so lucky that there are places to go like this website to get advise and support - thank you!