I am unsure if I have an official diagnosis of MS at the moment or not. I guess I’m kind of in a limbo state. So I thought I’d check out the forum and see what sort of support is around. I’ll share my story and a bit about myself and life at the moment (apologises if this is long).
I’m 26, female. On October 29th 2018 I woke up with weird vision in one eye, it felt weird to see like zigzags in my peripheral vision and I had, had an headache the previous day. As migraines are a part of my family, I went to the doctors who said it was a migraine, take pain killers and sleep it off, I’ll be better the next day. That didn’t happen, for the next 2 and half weeks I saw 7 different doctors and an optician whilst my vision deteriorated. I was also placed on a cancellation list for an MRI scan to rule out anything “sinister” as one doctor told me. I failed the field vision test and was considered “blind” in that eye. I was placed on migraine medication, told it was an Optical migraine and just left alone.
After 3 weeks (19/11/18), I was feeling even more down than usual. I had, had my MRI by then but no results, and no improvement at all in vision. I saw another doctor who was disgusted by how long I had been left, she thought it was some inflammation causing my vision and got me an emergency appointment to see the Ophamologist (however it’s spelt, I’ll just say eye doctor) the same day. Even though every test was coming back normal, I finally felt okay that someone acknowledged that someone had confirmed my eye was not working by doing a simple light swinging test. The doctor mentioned it looked like Atypical Optic Neuritis but he didn’t want me to have any steroids, and that basically there was nothing I could do but he wanted me to have some blood tests to confirm this (I have no idea what these tests were for) and would refer me to Neurology as a precaution. Told me to follow up with them in 2-3 weeks. Oh and they still didn’t have my MRI results.
10/12/18 Although there was only a slight improvement, I was still not able to see properly and on my return to the eye doctor, I saw a different doctor who sat me down and asked me if I had seen a neurologist (which I had an appointment for on 17/12/18), so I told her no. Out of nowhere she went: “Well it looks like you have Multiple Sclerosis.”
I sat there in a complete and utter state of shock, no one had mention this to me at any stage and she had dropped it on me. She then read my MRI report stating various lesions, of varying sizes throughout my brain mainly on the right side which the neurologist report suggest was demyelination. She then looked at my face and said “You look worried, what’s the problem?” I had to then explain that i had only been told of the Optic Neuritis and nothing more. To which her reply was “It’s nothing to worry about, MS happens all the time.” Then she sent me on my way in a stunned mess.
Shock was an understatement. I was devastated and confused and angry, in all honesty I still am. On top of this I had my family wanting answers, where had MS come from? what exactly was it? how do they make it better etc? and having to come to terms with it myself and that on top really just shook me up. By the time I saw the neurologist I had already prepared myself for the outcome.
On 17/12/18 my neurologist sat me down and asked me my history. I have depression (have had for nearly 2 years now), I had a condition called Vestibular Neuritis which knocked me off my feet a few years ago (he believes was my first tell), he tested my reflexes, checked my balance etc and he looked at my MRI results (my brain looked like a christmas tree), he asked if I was a smoker (I’m not) and my age, he stated that it was not normal to have these lesions at my age. He then asked if I had heard of MS, so I told him about the doctor above. He was stunned. But he told me that it was probable MS, and that he wanted me to have a Lumbar Puncture and some blood tests (to rule out other diseases he said), he told me to contact the DVLA with this diagnosis and that to use this date as my date of diagnosis. That he would get me in touch with MS nurses and after the LP would start me on medication. So I’m unsure if I’m officially diagnosed or not. But my consultant has been a trained doctor for 18 years, a consultant for 8 years and specialises in MS, so I assume he is pretty certain.
I had my LP 9/1/19, it was better than I had expected, but I did not get the headache, only backache which lasted a few days. The doctor who preformed the procedure told me to contact my consultant for my results in a couple of weeks as they should all be back. I have another appointment to see my consultant on 29/3/19.
I have rang my consultants secretary who said that the results I require won’t be back for 4 weeks and then she is on annual leave, so I have to contact her on 11/02/19. But in all honestly I’m unsure what I’m really do about the results, or what anything means. I don’t know when or how I’ll be medicated, if it will be my consultant in March or the MS nurses if I ever meet them and honestly I have no idea what I am doing.
I also have received a letter from my consultant with my blood results, and stating my Vitamin D level is insufficient and that i need to start taking 4000IU Vitamin D tablets daily. I obviously don’t know what the blood results mean either but my eye is vastly better however slightly colour blind in that eye, and it is no longer as strong as my other eye. It also gets worse when my body temperature increases. I’ve also felt incredibly tired since being “ill”, returning back to work has drained me incredibly. I’ve had numbness and pins and needles, I sometimes get twitches/spams and if I get really tired I start to get tremors which i have noticed more since returning to work.
I have no idea how i currently feel, I have no idea how to be, and honestly I’m scared about the future, but also I just want to know already, to start a medication, and feel normal again.
So this is me, and I just wanted to say hi.