This is my first post and I am writing in the hope of hearing from others to help me get my head round things.
My story so far: I had severe lights in both eyes in October, following weeks of triple vision and no feeling in my left leg. Having visited Eye A&E, I was sent to Neurology in the RVI in Newcastle. I was then scheduled for an MRI scan. I attended the MRI scan expecting nothing from it, as the consultant had said in the first appointment. When I went back for the result at the beginning of December, I was shocked to be told very bluntly that they had found something which potentially indicated MS. To make sure it was nothing else however I was booked in for a variety of tests including LP (which I was petrified of), Evoked Potential, ECGs, Xrays and blood tests. I only knew I was booked in for a test when a letter came through the post. Waiting for each letter made for an interesting Christmas.
I received details of the results of each test by being cc:d into rather scientific letters to my GP. My boyfriend kindly Googled the terminology in each letter for me so we can understand what was happening (so I didn’t see anything concerning as you do when you just Google medical things!). Last Thursday I received a letter from the Neurologist, which I took to my GP on Monday morning to clarify things for me. At the end of the letter it stated that I was being transferred to MS colleagues. My GP informed me that I was being diagnosed with MS.
Throughout this unknown process, I have been really supported by my close family and boyfriend but we are all very much in the dark so when I feel concerned I ask questions which unfortunately makes them feel helpless as they don’t know the answers. Not knowing where I am going next, my GP suggested that I contact the MS colleagues in the RVI to find out what happens next. After being put through twice to Muscular Skeletal Department a member of that team took pity on me and had a look at my records and said I was on the waiting list, she then put me through to Neurology, who told me they couldn’t find me on the records. Then I politely asked them to look again on the waiting list and see if I was on that. They then said I was but it will be a while (over two months) before I will hear from them about when I will be scheduled for an appointment. So the whole thing could be months away.
This has left me feeling really lost. I know no MS is the same and things can only be identified by the pattern of symptoms, but when I was going through the tests I felt that I had stages to go through. Now I have nothing but uncertainty and this has left me feeling so lost. I have made steps in my diet and fitness but based on what I have read on the MS Society pages. I haven’t wanted to tell anyone but my close family about my diagnosis because I don’t feel comfortable with it myself yet. I guess because I don’t really understand it.
I spoke to a lovely lady on the MS Society helpline today and she suggested posting on this forum to hear from other people who have or are going through the same thing. I was wondering if anyone else has received very little communication with the consultants? If so how did you cope with it? Is there anything you would recommend for me to do, to help through the wait in limbo land? To be honest I am really struggling to get my head round this.
Thanks so much in advance,