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Awaiting diagnosis

Hello 👋 everyone I have just joined as I really feel I need to connect with other people with MS. I'm April/May I had headaches, brain fog and some disorientation for a few weeks. Then one morning I lost sensation and touch on the left side of my face, arm and leg. My vision was blurry and I was incredibly disorientated. I called 111 who sent an ambulance immediately. They were initially concerned it was a stroke but after two MRIs on my brain they found multiple lesions... I spent 9 days in hospital before being discharged and my life has been turnt upside down. I have very little support and do not know where to go for it I kind of feel that I'm being ignored and left in limbo. I'm a single parent and up until this work full-time in a very stressful job. I had my follow up neurology appointment last Tuesday and was hoping for diagnosis or some answers but I had been booked into the wrong clinic. The neurologist I see is not a specialist in MS but has ordered a EEG, a nerve conductivity test, muscle conductivity test, follow up MRI SALT referrals for my swallowing (I choke often) and for my speech. Has anyone else had all the above tests? I have applied for PIP and a blue badge in May but still waiting decisions. Without financial support if I cannot work I do not know what we will do. Four doctors have told me it is looking like MS including the stroke doctor and the MS neurologist who I was supposed to see. It turns out I may have been having years of symptoms/flares of MS which until this latest flare were not picked up. Current symptoms include- Limited mobility - total numbness and loss of sensation RLS - I have had this a long time. Severe fatigue, Disorientation, Blurred vision, Severe pressure headache which goes into the top of the spine, Body aches, Itchy and tingly palms Choking Incontinence Insomnia at night, Severe Anxiety and Depression, Tremors, Clumsiness and lack of coordination, Brain fog Cognitive issues Sorry long message but I just wanted to know does everyone feel like they are left in limbo or should I be complaining? Any advice would be much appreciated 🙏 x

Hello lovely! I'm still recovering from my relapse 8 weeks ago and had most of the symptoms you're experiencing! I'm currently waiting to be diagnosed properly. Neurologists have said I've got MS due to multiple leisons on my brain and I'm awaiting results from my lumbar puncture I had 5 weeks ago in hospital. As soon as I was discharged I feel like I've just been left and forgotten about. Im finding it extremely difficult. I cry most days! I'm a mum of 3 one who I lost 9 weeks early, 12 and 2 year old. Also just fount out last Friday I'm pregnant again which is also a shock! Please do message me if you ever need someone to speak too. We need support right now and it's so lonely going through this illness 🥺 sending hugs your way xxxxx


Hi @CharlouiseXo Thank you for responding to my post. I'm really sorry to hear of your difficulties, I myself have miscarried so I can relate.. sending hugs and Congratulations on the pregnancy x My children are all older 23,17 and 16 I'm starting to feel the empty nest syndrome.. time flys. I'm sorry to hear about your MS journey and hope you feel better soon.. It is so hard isn't it? I cry constantly and really struggle with emotions. I just wish I could go back to my old life 😪 my friends and family try to support but it's difficult for them to relate. That is why I think it is so important to talk to people going through the same journey. Anytime you want to chat please feel free to message x