Hi, I’m posting today as I’ve been thinking a lot about what’s going on with me and I’m not ready to talk with my family or friends about it yet, I don’t want to cause them alarm unnecessarily. I’m a 24 year old male, and since I was a kid I’ve had bad migraines with visual disturbances (flashes, feeling sick, can’t stand the light) but over the last year or two my headaches have changed. About a year and a half ago I started getting real bad pain behind my left eye and saw floating lights and colours whenever I looked to the side or up or down. At the same time as this I felt very tired, dizzy, had pains in my right side and had a twitch on the painful eye. I saw a doctor who prescribed propranolol and over a few weeks the pain subsided. About 4-5 months later the same thing happened, went to the optician who said my eyes were fine, nothing wrong. Went back to the Dr who suggested I try sumatriptan which didn’t help and made the dizziness worse. He suggested I was having migraines and abdominal migraine (??)… but slowly over time the pains went away again but this time the eye twitch stayed for 6-7 weeks. I had a colonoscopy and gastroscopy which were both normal. Since then every 4-5 months this pain behind my left eye returns and I can no longer see in daylight without sunglasses, even on dull days. A few weeks ago I started noticing my calf muscles twitching constantly and both my arms twitch randomly throughout the day. For the last 10-11 weeks I’ve been feeling really tired for no reason, sleeping for 12-16 hours if I don’t set an alarm and getting exhausted after work. I’ve had frequent heavy feelings in my legs and a bit of back and neck pain. The pain is back in my head and I’ve begun forgetting people’s names, putting things in strange places at work and forgetting how to spell basic words. Last week I kept mixing up g’s and q’s and I’ve found it difficult having conversations, muddling up words etc. I’ve felt dizzy and unsteady on my feet and also noticed pins and needles in my feet when in the shower. I saw a different doctor last week who did a basic neurologic exam. She said she felt a weakness on the right side of my body and felt my arms and legs shake and twitch occasionally. She has referred me to neurology and suggested I try nortryptaline for the migraine. So far it has helped a little but not with the twitching etc. I hadn’t even considered MS or any neurological condition, I thought it was work related stress and migraines but now I’m beginning to get scared. My grandmother has MS and although she manages on her own she struggles to walk and has very little feeling on one side. I’m not sure who to vent my worries to, so I thought I’d post on here! Any thoughts are welcome!!
This is clearly a worrying time for you and I understand why you don’t want to discuss it with family and friends, many of us will say we felt the same at the initial investigation stage. For me, I felt there was no point in worrying my friends and family until I knew what it was for certain.
Unfortunately neurological investigations seem to take forever unless you are very lucky so you are going to need the patience of a saint. There is no single test to determine if you have MS, there are only tests to rule out other conditions. There are many things that can present neurological symptoms which mimic MS including vitamin deficiencies. Although your grandmother has MS that only slightly increases your chances of having MS as, although there is a genetic link, it is not actually hereditary.
Even IF you are eventually diagnosed with MS you have the perfect role model in your grandmother who, in your own words, manages on her own. That is so true of many of us with MS, we lead very normal lives, we still drive, work, take holidays, marry, have children and so on.
The other thing is that you are very young and there is now real promise of a cure in the next 15 or so years and IF you are diagnosed with MS you are likely to benefit from the huge leaps in research that are now being made.
MS is not the end of the world - there is hope.
Hi J17 and welcome to the forum…
A very scary time for you and no wonder you’re worried.
Your GP has done exactly the right thing by referring you to a neurologist.
There are actually hundreds of different conditions that have symptoms similar to MS… and some of those are very easily treated. So for now, try to keep open minded. It is not necessarily MS.
The neurologist will give you a physical examination and ask lots of questions about your symptoms and medical history… so make a list of symptoms… but don’t make it too long or detailed as the neuro won’t read it all. Stick to the main symptoms as you have above.
They will then refer you for an MRI scan of your brain to see if there are any lesions (scars) showing which can indicate MS. If there are no lesions showing they will try and find out what else can be causing the problems. If there are lesions showing they might at that point be able to diagnose MS, but very often they will want to do more tests to be sure.
As there is not a single test for MS, this can be quite a long haul. So don’t expect any quick answers.
Having a grandmother with MS does give you a very small higher chance of having it. It is not genetic as such but there is a slightly higher chance if a family member has it (I’m afraid the reasons why are way above my head!).
However this does not mean that your MS (IF you have it) will be anything like your grandmother’s. MS is different for everyone… even in the same family. Also keep in mind that MS treatments have come a long way since your grandmother was diagnosed. AND new treatments are coming along all the time and for the first time in history they are talking about a cure being on the horizon!
Most people with MS can lead a fairly normal life… work, relationships, babies, travel… etc etc… so it is certainly NOT the end of life. Even if MS has a bigger impact, life can still be good and happy.
So, for now, keep open minded. It might not be MS at all. Rest as much as you can as any neurological symptoms are made worse by fatigue… and heat… so in this heat-wave keep as cool as you can.
Best of luck and I hope you get some definite answers soon,
Thanks guys I think the worst thing I could’ve done was to google my symptoms, although coming on here has put my mind at rest so to speak. I’d just like to know what’s going on, but I’ll try to be patient! I’m having a horrible time of it ATM. Had a terrible migraine last night and had to phone my parents to come help as I couldn’t walk as I was so dizzy. I’ve also started having a tight feeling in my chest and back, don’t know if this is related or if I have a touch of hay fever. Will update after I’ve seen the neuro!
Hello, Just wanted to wish you well for your appointment with the Neuro. Sam x