Spoke to my local MS group last year when I was seeing Nuero and awaiting my MRI scan, both Nuero and Gp thought MS but clear MRI and lack of lower limb problems ment no Dx. My Gp thinks early stage MS and has been supportive, since had bladder issues and been Dx with Raynards and conective tissue disease, but this do not explain all my symptoms. Anyhow, last year started attending the MS chair yoga group and a monthly young MS group. After a winter break they are taking of starting the meet up again, although I have been invited I’m not sure if to go. A woman at the yoga group keeps asking me if I have been Dx with anything yet and it makes me uncomfortable, although she does come out with a lot of inappropriate Comments at inappropriate times! No longer working, I gave up to care for my mother in law who had had a stroke, I then became ill myself, and she became worse, she died last summer. The friends I made when I had my children I have lost contact with, and wouldn’t be able to keep up with them anyway. Not sure what to do, anyone else in the same boat? Going back to see Nuero in a few months and expect to be discharged, Gp wants me to have annual MRI’s but not sure if they will do them. Last thing Nuero said was ring the clinic or come to A & E and tell the them I am under the Nuero!
hi apple pad,
i do seem to be in the same boat!! i have lots of ms symptoms, numbness, tingling, fatigue, balance, to name a few. my mri scans have been clear apart from age related spots, which i cant find any reasons for. the last time i saw my neuro he told me i have medically undiagnosed symptoms and i would have to see someone to manage my symptoms.
my gp is very supportive, i cant work i get full disability benifits and my hubby has taken early retirement to care for me.
i would like to go to a ms group but im not sure if having no dx i should go. i hate this do i or dont i have this nasty illness. i am not even sure if i will see the neuro again, and feel i am thought of as a fraud making up the symptoms.
perhaps we should paddle the boat together and im sure pick up a few others along the way!!!
love lorraine x
I bet the rest of the group feel the same way about this woman as you do! She probably thinks she’s being friendly as well I bet most of them don’t give two hoots if you’ve been diagnosed or not. If you share similar symptoms then who cares?! Why not ask the organiser? If they say it’s fine, then maybe ask this woman to stop talking about it as it upsets you? And if it’s not OK to be a member, it’s probably not the best of groups anyway! It takes a while to adapt to having loads of free time, but trying new things can bring new friends and pleasure. I’ve joined the gym, done mystery shopping, got in touch with a few old friends (lunch, nothing energetic!), made new friends, done a Spanish evening class, joined a Ballet Appreciation group,… It’s taken a while, but I have a nice balance now. You will get there too Karen x
Thanks for that been to the MS chair yoga this am and spoke to one of the leaders, she says its fine for me to come along to that and any of the other things they arrange. Spoke to some of the other ladies and they were fine too. The other lady I think I will just have to put up with, she came out with some rather inoppriate comments today in the middle of yoga, directed at someone else not me, so think its just her. I have been doing some rather draft stuff recently and my memory has been terrible, sometimes this is more of a worry than my numb arm or my week left side and pins and needles etc. Wil just have to see how I go.