I hope your all keeping warm in this icy weather! I haven’t posted before and would really love some advice if you can bear with me with this hopefully not too long post!
I was dx in April 2012, after 4 years of going to my GP and them putting my symptoms down to “work related stress”. I have lesions on my brain and spine evident on my MRI. I am not currently on any meds as my Neuro has said I have to have 2 x clear relapses in a 2 year period to be eligible for the drugs. I am a 36 year old female with a 6 year old little boy and a part time job.
I guess my main symptoms are numbness (in lots of places!), fatigue and low mood. I can kind of stay on top of these with trying to get rest and managing my stress (easier said than done!). I take Fluoxetine, Vit D, Omega 3 (Fish & Flax in highish doses).
In August this year I started with a sore right arm, kind of felt like a pulled muscle. It lasted quite a while and at the time I put it down to dragging luggage about on holiday. This happened around the same time as a UTI and some urinary hesitancy. In October it transferred to my left arm and pretty much rendered the arm useless, with severe night pain. My G.P said to contact my M.S Nurse so at this point I contacted her to ask (beg) about pain relief. I also started to pay for twice weekly physio to try and help and until I could get a referral to an NHS physio.I didn’t get a response but I was with her the following week for my annual meeting so we talked about it then.
I explained my symptoms and she said she would grab my Neuro to come and have a quick look, which he did and proceeded to do some “strength test” along the lines of push up on my arms, put out onto my arms - whilst he provided resistance. After a few minutes he declared it was not a relapse and must be musculoskeletal and sent me on my way with a promised referral to an NHS physio. They have said they wouldn’t perform any more scans until I was placed on a DMD in order to get a baseline.
The physio referral still hasn’t come through so I am still paying independently for my physio (eekk!!), which seems to be helping with the muscle tightness in my shoulder that was radiating down my arms. She says it could very possibly be my M.S but if they won’t scan then she can just continue to help me with my symptoms.
To cut a long story short I have now got two identical numb feet (incl soles of feet and lower legs), you could literally stick a pin in me and I wouldn’t feel it. I think I am so used to being told whatever symptoms I’ve got are not M.S that I have told myself its purely a podiatry issue and am going to see my G.P on Monday.
I’ve almost convinced myself I don’t have M.S as I feel I’m just “fobbed off” when I tell them about any symptoms.
So I guess I would value any opinions (if you managed to read this far!), do I need to be more firm and direct with my Nurse & Neuro? My family simply can’t understand why I’m not on meds, even though I try to explain why - I guess they want the best for me. I also feel that I can’t be in pain relief limbo like that again, being shunted between my G.P and M.S Nurse with no fast response - it was a real struggle!!!
Thanks for reading!