Struggling -newly diagnosed
where do I begin?
Newly diagnosed as (highly likely) RRMS. Had MRI and all kinds of other nerve path tests when symptoms first occurred 5 years ago when specialist queried RRMS theN pretty much nothing for 5 years and then BAM!!! Specialist says no drug treatment for my type of RRMS just monitoring symptoms and working on my health and strength. Most recent symptoms triggered after nasty virus in January and LOTS of stress- numbness and tingling in legs and feet that have become less intense over the last few months. Was signed off work for nearly 4 months - fatigue and other symptoms made work so difficult. Had fantastic support form employer and occupational health nurse. Back at work on short hours. Went away on pre planned holiday for 2 weeks (back 2 weeks ago) where we did 7 cities in 12 days (in hind sight probably should have cancelled) Symptoms have been more intense since and I'm exhausted! Should it take so long to recover?!?! All so new to me and I'm struggling for all sorts of reasons. People tell me I look great but I feel rubbish! Worry they think I'm a fake because no visible symptoms!! I'm worried that the numbness and tingling are still there after 6 months (my specialist had said they could last a while or become my new steady state depending on nerve swelling and if there's been any damage). Mentally in a bad place this weekend - tiredness not helping. Loving husband and family/friends around me but feel so alone and anxious at times. Just want to feel normal again but don't know what my new normal feels like!! Hope I'm not sounding pathetic? Not sure I'm even making sense to any of you! Sorry for such a long post 😢
Hi @roma , sounding pathetic? Not at all. You're dealing with a neurological condition, which is still a mystery to the medical profession. It is actually very therapeutic to put your concerns into words - a problem shared is a problem halved. Yes, the invisible condition. It is frustrating when externally we look normal, but inside we can be in turmoil. Unfortunately, that's the nature of the beast. It's good that you have full employer support for you. This is a great comfort. Your recent holiday has obviously taken a bit out of you. Take a few days out to give yourself a chance to recuperate. We now have limited resources, so we need to find the balance that works for us. Your holiday has temporarily tipped this balance. But, we need to do these things, otherwise we start restricting ourselves.......... You've probably worked out the relationship between stress and MS. Stress is a major antagonist of MS and is best avoided. I'm a bit concerned by your diagnosis. There are a range of treatments now available for Relapsing Remitting MS (RRMS), but there are presently no treatments for Primary (PPMS) and Secondary Progressive MS (SPMS). It is important to know your exact diagnosis, so that you can set your expectations and thereby manage yourself more effectively. Do you have an MS Nurse assigned to you, someone to discuss this issue with? Hope this helps
Thank you @stumbler. It's good to hear theses thoughts are typical. Re diagnosis and treatment. To be fair the specialist suggested monitoring and review around about now. He also did mention drugs for RRMS that he said were very good - I need to book to see him but been putting things off. Maybe time to go see him!