This is mt first post and my first time visiting this site. I’d come here for some help as I am stuck in the limbo stage of diagnosis and the longer I wait, the more worried I get.
January this year, one day out of the blue I began to feel “drunk” while at work. I felt my vision blur and I began to develop double vision. Over the course of a few hours the room had began spinning round. I was just about able to make it home. I had a nap when I got home, but I woke up worse than before. I couldn’t see properly with both eyes open, everything was spinning and I thought one of my eyelids had started to droop. I had a mild headache, so thinking that I was getting a migraine I took painkillers and went to bed. I woke up on Saturday morning unable to walk in a straight line, i had double vision and I had developed a pretty terrible looking squint. I took myself to A+E where a neurologist working in A+E diagnosed me with Internuclear Ophthalmoplegia and 3rd nerve palsy.
I was admitted to hospital for 1 week and over that time I was given IV steroids. The neurologist told me that the symptoms could be caused by MS but they would need to conduct other tests. My blood tests came back positive for Lyme disease - but the head of disease prevention said this should be treated as a false positive given how rare the disease is in Northern Ireland. Nevertheless, I was treated with a high dose of antibiotics anyway to make sure. I was given MRI and ct scans of the brain and spine which indicated a small lesion on my spine. I was also given a lumbar puncture test which I was told I had to wait on the results. After a few days my eyes went back to normal, the double vision dissappeared and my balance returned and I was able to be discharged from hospital.
Since January, I have felt completely normal again, if just a little bit shocked. The neurologist has been fantastic in arranging follow up appointments, blood tests and mri scans. The results of my lumbar puncture test came back completely fine apart from the ogliconal bands? which indicated an infection somewhere. The general impression the neurolgist gave me was that he was still suspecting MS, however I had no other symptoms and my bran scan was clear. He told me the problems with my eyes could have been down to the sinus infection I had 2 weeks prior and I was to have an MRI again just to follow up. He said my INO could be just a clinically isolated event which may never happen again.
This week I received the results of my follow up MRI. The small lesion on my spine cannot be found, but instead the MRI has shown 2 lesions on my brain which weren’t there before. At the appointment, my neurologist said that I should prepare myself for a diagnosis, but that it still may not be MS. He said that some drs would diagnose me with MS there and then, but some of them would like me to have another symptom of a recurrence of the same symptom (in my case it was INO) which then would confirm a diagnosis of MS. He has told me he will discuss my case and hs referred me on to an MS clinic for specialist discussion. The reason I am looking advice is because I am feeling absolutely horrible at the minute because I feel like I am stuck in limbo between wanting to feel hope that it is just a vitamin deficiency and willing it to be MS so that I can be treated early. The neurologist said that what they don’t want is more lesions to appear.
I feel shocked by this all and totally terrified. Ive just started a new job and Im worried about everything. To make matters worse, its been 3 days after the appointment and Ive been feeling like one hand has been tingling all day. I feel like a hypochondriac and I feel stupid. Is it likely given the evidence that I do have MS? How long will it take to find out if I do? Is my neurologist worried about telling me and being wrong? Should I want to be diagnosed? Should i get early treatment? What else could it be?
I just am so ready for this roller coaster to end