Hello There, I’m new to the website and to the term MS. Here’s my story… 9th January 2014 Its the morning - I felt tingling in my toes… I convinced myself that this was because of the way I was sitting (I often curl my toes) By the afternoon it feels worse, a bit like pins and needles - I convince myself it’s because I recently started a new diet and i must be lacking in something. That evening I’m walking round the supermarket and it has traveled up my legs and is now a bloody inconvenience. I’m walking like I’ve just sh*t myself. I wake up the next morning and convince myself I’m ok to go to work and it’s all in my head. That whole day I’m in a lot of pain particularly my left leg. Still I go on with my days business (this is very me - I don’t like to complain and I’m forever doubting myself) I go to the in laws for dinner that night and the pain is progressively getting beyond a joke - like a constant pain (when u get cramp in your legs and you squeeze your toes and the pain is hilariously unbearable, kind of like that) mind you, another joke that evening was how annoying my mother in laws partner is. Haha. I ask my husband to drive us home as I’m not up to it. I can’t even find the strength to put my toddler in her car seat in the back. On the road home I apparently turn white “I think I’ve just pee’d myself” and the hubby replies “if you’ve pee’d, you’ve pee’d!” Turned out I haven’t peed, but I have a warm sensation running down my leg. 11th Jan, hubby wakes me and asks if he needs to take the day off work to help look after our daughter. I tell him I’m fine and I’ll live. (God damn my pride) By 12pm I’m in tears, I can’t even lift my daughter because my whole left side of me is on fire!!! I’m wearing hideous elasticated trousers borrowed from my gran (I’m 25 btw) I call nhs24 who tell me to get to hospital for a check up. I call my hubby who then hurries home. I get checked out in hospital, the doctor touches the left hand side of my body and I scream in pain… Yet a couple of paracetamol and rest will get rid of this? I break down! (Very unlike me) I leave the room to go compose myself and my husband has a stern word… So, instead of the journey home I’m sent into the ECU unit for tests. The hubby goes home with the little one and packs her a wee bag for a sleepover at my parents house. After numerous tests and numerous junior doctors round my bed at one time I’m admitted to hospital for the night with a possible infection of some sort… I’m now on morphine and getting myself comfortable for the overnight stay. My 1 night in hospital turned into 13!! My possible infection turned into possible MS… I’m sent for MRI, they have found multiple points of inflammation on my spine. 3 - top, middle & bottom. I have a lumbar puncture and results come back showing I have too many white cells (if I remember correctly) 3 different doctors (non specialist) have now told me that they believe I have MS. I am put on a high dose of steroids for a week and eventually I can bare to touch my leg again. I am put on gabapentin 800mg 3x per day. I see a professor of neurology whilst in hospital who also believes I have MS. During those 14 days I also suffered other symptoms before knowing about MS, these are also ongoing… Such as; sudden need to urinate then not a lot happening when I get there. I am now clumsy and a little forgetful. I can also add, shocked, sad as well as so so bloody tired. The worst tiredness I have ever felt. When I was discharged from hospital I was told to make an appointment with my GP and I should wait on a response from neurology in greater detail. From then until now I have seen my doctor on 3 occasions. 2 appointments for a catch up and to update my sick line for work and one because the strange constant tingling static sensation in my leg was on my last nerve. (Oh I forgot to mention, I was issued with crutches when I was discharged) Ok… I’ve just rambled on, sorry… This morning I received a call stating that I have been on the waiting list for an appointment within neurology and they can offer me one on Monday morning - basically I was just wondering if anyone could point me in the right direction as to what to expect from this appointment. I’ve read several other posts on what to expect on the first appointment but I presume mine will be different as I have already had an MRI and lumbar puncture. I’ve not yet had an official diagnosis. I’m kind of at a loss. Part of me just wants the diagnosis just so I can get on with my life. I also have an insurance policy that covers me for the likes of critical illness, MS etc so of course If I get the diagnosis I will be rushing that policy on but this pay out of course does not mean that I particularly want to have MS - I hope you understand what I mean. Is it worth mentioning to the doctor that I have an insurance policy in place or does that look a little odd? I’m glad now that the ball is rolling but I’m impatient and in need to get back to work soon in order to contribute to my household to my full extent! Once I have a diagnosis wether that is MS or not I can then explain in thorough detail to my employers my needs for returning to work. Thank you so much for reading and sorry again for rambling on. Any advice is appreciated. Kind regards Sarah
I’m so sorry that you have had such a rough time recently and I hope that you are feeling much better now.
I would imagine that when you see the neurologist next week, he will examine you to see how well you have recovered. As to a firm diagnosis, I’m not so sure about that. Sometimes the doctors in hospital ‘jump the gun’ without knowing about the McDonald criteria which is the diagnostic benchmark for MS. This happened to me and a ward doctor gave me an MS diagnosis out of the blue which a neurologist overturned the very next day!
Basically to get a firm diagnosis under the McDonald criteria you need to show ‘dissemination in space and time’. This means that you need to have had relapses in at least two different areas of the body and with a period of time in between. (I hope I am making sense here.) This needs to be supported by clinical evidence like the MRI and symptoms. So, although you have had one attack, or relapse, you would need to have another one to be diagnosed under the McDonald criteria or have another MRI in a few months to show further lesions.
Of course, every neurologist works in a different way and interprets these guidelines in their own way so I am just saying keep an open mind and don’t go along thinking that you will get a definite diagnosis as you may be disappointed.
So many people are left in limbo every year when they are quite certain they now have enough evidence for the neuro to make a firm diagnosis. The thing is that MS is a lifelong, incurable disease so the neuro will, quite rightly, not make a diagnosis until he is absolutely certain.
The best thing you can do is to make a note of any symptoms you are still having problems with and think about whether you would like any medication for them. Think of any questions you would like answers to and make a note of any new symptoms. Best of luck for your appointment on Monday.
Tracey, You made perfect sense. Thank you so much for taking the time to read my story and replying to me. I am very grateful. Like you said, I will make note of all symptoms I currently have and let the neurologist know. I will give an update after my appointment. This could also allow those in the same situation have an heads up as to what to expect. Thanks again, Sarah.