Hi,
Never really been much good at writing things like this really but here goes anyway. I recently turned 18 boy and started to notice weird feelings in my legs and hands that I just couldn’t describe. Due to my Mum having MS I became very scared and would continue to put off going to the doctors in the hope I’d wake up the next day and everything would be fine. In short, it didn’t. Finally my Boyfriend (yes, I’m gay) managed to convice me to go. He is the only one who knows and is being really supportive and trying to convince me a cure is just around the corner. I finally managed to pluck up the courage and the doctor and she seems egar to get me to have a blood test and MRI. I am so nervous and scared, this has all come about so quickly and I just seem to be able to think of the worst possible situation. I cannot bring myself to tell my Mum either as I know she will be absouletly heartbroken! Think i’ll wait to tell her about my sexuality for another time! It seems to be putting a huge amount of stress on me as the idea of being the minority of a minority is very dawnting. Thoughts?
Also just afew questions which I can’t seem to find out:
How long does it usually take to lose the ability to walk without aid?
On the symptoms about bladder and bowel, what exactly do they mean by that? As in going frequantly?
Should I tell my mum or wait for the results, I really don’t want to give her any undue stress if I am all clear?
Thanks!
anon
Hi Anon, Sorry to hear about the stressful time you’re having. I understand your worries as I was diagnosed with MS just 4 months ago but had spent the previous 12 months feeling scared about what my symptoms all meant. I’m glad to hear that your boyfriend has been very supportive and persuaded you to see your GP. If he/she does refer you for an MRI then this will hopefully get you seen by a neurologist. But you may have a fairly lengthy wait both for the MRI and to get the results. I was 6 weeks waiting for the MRI and 8 weeks waiting for the results. From being on this forum I learned that appt times vary hugely. I didn’t tell my parents because my Mum had only just gone into remission from having cancer and I couldn’t bear the thought of causing them any more worry. It was 8-9 months before I told them. In the 12 months when I was waiting for appts/tests/results, my coping strategy was to keep myself really busy so I had less time when I could think worrying thoughts. I also drew strength from how brave my Mum had been. Try to stay as positive as you can to help you get through the not-knowing phase. You may not have MS, but if it turns out that you do, I’m sure your Mum will be extremely supportive. Remember no two people with MS are affected in the same way, even if they are related. Therefore try not to assume that if you are diagnosed, you will be affected in a similar way to your Mum. I assume you live at home with your Mum? I understand you want to spare her the worry but she might well detect something is troubling you and be worried anyway because she doesn’t know what. As you may be a long time in finding out what is causing your symptoms, I think it would be better to let her know. Perhaps your Mum has an MS nurse who you could chat to? Or may be you would find it helpful to phone the MS society helpline. Regarding your more specific questions on walking and continence, I can see that you’ve been reading about symptoms and scaring yourself even more. I would advise against “reading up on MS” and try not to jump the gun here. Sorry if I haven’t been able to help you much, but I wanted you to know that there are lovely people on this forum who really care and as I’ve recently found it’s a great place to chat to people who understand. By the way, have you looked at the GLAMS forum on here? You may find it helpful to chat to others who are gay and affected by MS. My very best wishes to you Anon. Take care, RedShoes. Xx
hi anon
i want to give you a big hug but will make do with just telling you that you must stop worrying before you have anything definite to worry about.
red shoes gave good advice so i wont repeat it.
walking and bladder difficulties might arise further down the line but there is a lot of support out there.
basically keep yourself healthy - eat well, sleep well, drink lots of water, get plenty of fresh air and exercise.
it will give you less time to worry and you’ll be in a better position to cope with diagnosis if you are at the peak of health.
i’m so glad that you have an understanding boyfriend.
take care
carole x