I was diagnosied with ms June 2013, turns out I’ve had it since 2005. I’m feeling very confused & lost. I have no idea when I have a relapse. When I was first poorly in 2005 I could list everything that was wwrong. Doctor’s say I had a relapse at the end of 2012, the only reason I knew something wasn’t right was due to the pins & needles in my hands and arms.
Find it very hard to know what a symptom is or what’s part of normal life.
If anyone could give any advice or insight.
I’ve been feeling very low, work has been stressful recently. I cant concentrate & keep forgetting things very quickly. I’m so tired & worn out, don’t know if I’m coming or going. I fall asleep during my days off, no energy.
I keep, getting a warm patch on my left leg. I occasionally get cold patch on my fingers & toes. My bathroom habits have changed recently, I go then need to go again straight away. I have no idea, what is part of my MS & what is something else.
I wish I understood. I saw my consultant last week for the first time since I got diagnosed, he wasn’t very helpful, I did mention the above he wasn’t very helpful. He’s asked me if I want the injections, I don’t know I was understanding that I couldn’t be given medication yet as I haven’t had two relapses within two years.
Any thoughts or advice would be much appreciated.
Thank you in advance
Hi I’m fairly new to all this MS stuff myself but I do believe in some cases you can be offered treatment with one episode. So after you explaining all your symptoms to him that’s probably why he’s asked. Has he arranged for you to speak the ms nurse at your hospital? They would be able to discuss with you treatment options. Polly x
Hello, poor you, you do sound to be totally wrung out hun.
What about a spot of sick leave, in the hope of catching up on some rest? You can self certify for a week.
I think you need a good talk with an MS nurse to discuss the various meds.
luv Polx
Hi minnie, oh lovely I wish I could tell you what to expect when a relapse was happening, but I truthfully can not. They come and they affect you in such a different way than everyday living with this illness does. I am 11 years post RRms diagnosis 13 years of living with the strange and often distressing symptoms that can affect my life daily. Relapses can be relatively small in presentation and recovery is quicker and leaves little or no evidence of its occurring or they happen and take much longer to recover from and leave you with physical damage that can affect your life. The sensory, cognative and toilet use problems you describe are in truth things so many experience everyday in some form or other and very common in this bloody awful illness but not a great deal of constellation for you perhaps but they happen. It is an awful path you now find yourself walking lovely but one you need not walk alone lovely. There are lots of people here walking with you. Regarding your medication route I would have thought that a positive diagnosis of ms would be sufficient in a suggestion for treatment. It is very expensive and so he/she must feel you meet criteria, I had to wait until my symptoms presented differently ( took 4 relapses) before I was offered avonex. Ask to see them or ms nurse to discuss your options. Remember your worth and push for whatever will make this illness more manageable to live with lovely, it may take very little. Big hugs Joy xx
Thank you for your comments.
I do have an appointment with my gp next week & I see my ms nurse next in April, I’ve been meaning to email her about the injections but I’ve been so wrapped up in work, but I’m hoping that will change from next week as my hours are going to change.
Sometimes I feel I’m blowing things out of proportion & I know there are people out there with more serve ms & im over reacting reading too much into my symptoms, it could just be part of normal life.
Do any of you do regular exercise, I was told it might help?
Also some people think I should try going to a support group, but not sure that would be the right thing for me. Any thoughts?
Thanks again for your advice.