Hello, I was diagnosed with PPMS last week and I’ve seen recommendations from some of you fine folks that I should track my symptoms, what all do you track (sleep, food, exercise, medication, PT?) or severity abd what format do you use? I’d obviously like a system that’s not too time consuming but helpful for me and useful for my neurologist to see trends or decline. Do you use paper or digital? What kind of information do you wish you had from when you were first diagnosed (I’m 34 and very active and most worried about having to give up or severely modify my hiking, cycling, yoga, etc). I’m trying to do everything I can to remain positive and “do something” although with no real treatment or cure I guess the most I can do is stay vigilant in monitoring myself. All of your thoughts and recommendations are much appreciated. I’m very happy my physical therapist recommended this forum. It’s nice to not feel so alone.
Hi Regina, I just keep track of Dr appointments (I don’t have a neurologist) and any symptoms that arise on my computer. I’ve never been on any DMDs (in fact never been offered any), but I looked after my diet - I’m a lifelong vegetarian so not sure if that has made a difference or not. The main reason I keep a record now is for PIP renewals. I’ve had MS for many years and am now in a wheelchair. I know many people worry about being in a wheelchair, but in the end it was liberating for me. Plus, it was 30+ years before I had to use a wheelchair and before that I enjoyed mountaineering and walking and was very, very active. I have lived life to the full even after my MS diagnosis, it never stopped me or hindered my life expectations as I had a good career and travelled the world - I’m an old soul now and still enjoying life. Now I use my wheelchair to take my dog on long wheelies as I have an attachment on it so I don’t catch him with my wheels but he’s so used to going wheelies (walkies) that he knows to keeps away from the wheels now so I could remove the attachment. If your MS is like mine hopefully it will be a slow progression - its always there but life can be so sweet. Maz
Regina, I’ve got PPMS too. You must remember that everyone is different. When I was first diagnosed I was ‘cross’! Decided that I can’t beat MS but it’s not going to beat me. Have found that stress has bad effect so avoid stressful situations, eat well, sleep well. If/when hit with fatigue listen to your body and rest or snooze. Think positive, keep doing what you’re doing and “Always Look on the Bright Side ” ! Weirdly I suffer from hay fever badly but it takes my mind off MS and MS symptoms aren’t as bad!
You could do worse than take a look at the unapproved ldn, as a treatment option. My GP has prescribed it on the NHS for nearly twenty years and my only regret is not starting it sooner. Far from a miracle cure, but might help slow down progression.
Low Dose Naltrexone (LDN) Choices booklet | msuk (ms-uk.org)