My ms journey
I had a terrible time getting a diagnose. First symptoms 2009 with numbness and tingling in hand. 2011 blind spot and visual disturbance. Told by doctor to go to optics ions. Waited 11 months for scan and told a white mark on scan but it was on the film, nothing to worry about. 2012 carpal tunnel op for my hand, obviously didn't to any good as I had ms! Problems with leg and foot started in 2014. Told at least six months to have another scan so went private in the November, paid for my own scan etc had a diagnose in two weeks. Back to NHS no drugs as I wasn't having relapses, told u got about 15 years until disability starts getting serious. February 2016 diagnose changed to secondary progressive. October 2017 had to give up work. Now incontinent and cannot walk. No drugs except for my ms hug. No physio since Oct 2019 as I have had my quota. Nothing for secondary progressive. Asked ms nurse in June 2019 if I could see specialist as my other leg stopped working ,told no it was just progression. Last saw my neurologist in February 2018. My life in now sitting in a chair relying on my husband for everything. I have one weak arm due to my ms and then a frozen shoulder. All I can advise is do not be polite like me, don't take no for an answer. Fight for a diagnose and treatment. Too late for me but not u. If I had had treatment in the beginning life would be very different. Good luck.

Hi @Edith54 that is a horrendous journey and complete mismanagement by your health professionals. I had similar numbness then optical issues (seeing double) however my NHS board sent me for a MRI scan "relatively" quickly. Do not give up you thought about enquiring after Spinimod? https://www.healthline.com/health/secondary-progressive-ms/new-treatments if you have active lesions? Or even HSCT (I decided to go for that after my SP diagnosis) though you iwll probably have to self fund :(
Hi Edith, I understand everything you are saying. I have been referred to another Neurologist back in August and I’ve still not heard from him. I’ve just been discharged from seeing a physiotherapist today . I think nobody really understands what MS patients go through because they have never had the go through loosing their independence. I think it’s about time GPS and other medical professionals listen to the patients. I had to beg my GP after having my relapse in April 2018 and I got my diagnosis in Feb 2020 from hospital neurologist . I’m not any medication and I am still able to walk a bit but it’s a bit hit and miss. Hopefully you managed to get some comfort from MS fighters. Which we all are because we try to keep going . Take care and keep safe. Xx