In October 2017 I began to have pins and needles in my feet! My feet felt like they were on fire and like my shoes were crushing them! I happened to be on holiday when it was at its worst and was unable to walk for long distances, and had to keep taking my shoes and socks off due to compression/burning feeling however this did not help! The severe feelings calmed down after a week but the pins and needles remained and after a few weeks slowly moved up my legs! It was at this point I realised something was seriously not right! I had started a new job and couldn’t take the time to see my GP so called NHS 111 who sent me to A and E! I think they were being over cautious as I only saw a hospital GP who then referred me back to my local GP for blood tests! All tests came back clear or any deficiencies and I was referred to a neurologist. A couple of months later I had my first appointment with the consultant where lots of physical examinations were done and the consultant explained how these symptoms were very common in people and unlikely to be due to any certain conditions! I was sent for an MRI to rule out anything but I received a letter from the consultant saying the symptoms were unlikely to be anything conclusive. I started to get other symptoms, the feeling like my elbow was wet, incredible sensitive skin to heat and clothing, both of which have now gone, some bladder incontinence, and most recently an awful pins and needles sensation in my lower back that shoots down to my legs when I lean my head or body down but I remained positive and kept thinking how the neurologist had said these symptoms were very common and a diagnosis of anything was very unlikely.
5 weeks after the scan I went back to the consultant for my results and was incredibly surprised for him to show me my scans of my brain and spine and point out numerous lesions on my brain and even more so on my spine. He said this was symptomatic of MS and was pretty conclusive. I was sent for blood tests to rule out any other auto immune diseases but he explained this was very unlikely and that the scans were pretty conclusive of MS. He said I would be given an MS nurse and referred to a specialist at another hospital.
So here I am, waiting for more appointments and I suppose awaiting an official diagnosis! He mentioned the different drugs and said the specialist would look at what is appropriate for me. In peoples experience, should I assume a diagnosis of MS is coming? How long can I expect to wait for the appointments with the specialist and nurse?
Unfortunately due to starting a new job at the same time all of this began, and having had to have some time off to have a tonsillectomy, and for quite a lot of appointments, I have had to make work fully aware of my current situation and that I am awaiting what looks like a diagnosis of MS. I am currently in my extended probation, this is due to having time off for the tonsillectomy and nothing to do with my performance I should add. However my dr has now signed me off work for a few weeks due to depression and symptoms. I have had an open conversation with my employer and I am looking to only take a few days off instead of the full four weeks. I do not want to lose my job! I should add I am only 27 and looking to buy a house soon! My manager is very understanding as his mom was diagnosed with motor neurones last year but at the same time I appreciate it is a business and I am cautious that my absence may cause issues with my job! Everything feels incredibly overwhelming! I am depressed, worried about work, worried about the symptoms I have now, what the future holds and cannot stop seeing the scans in my head, particularly the spine which was littered with lesions.
This is an incredibly long post so if anyone reads this, thank you so much! What were your primary experiences? Does my story so far resonate with yours in any way? How long before my appointments come through? Experiences with work? How to ease my symptoms whilst waiting for drugs? Anything you can comment on would be so much appreciated!