Hi, I am new to all this having only been diagnosed on Thursday after a whirlwind 8 weeks. I have been reading all of the information and support in your posts and they have helped me greatly over the past weeks. I wanted to post to give a little bit of hope to other people who are as yet undiagnosed. I am 38 and married to a lovely, supportive husband with 2 great children and work full time as a teaching assistant which I absolutely love and had never been off sick before Easter. I had optic neuritis (really horrible!) last March, my sight recovered in about 6 weeks other effects like a torch being shined in your eye at night lasted months. Then in October I lost the feeling in my foot for a week and December lost the feeling up to my knee both times in my left leg. It left my leg weak and I had to tell myself to walk properly if that makes sense. I was training for my first half marathon at this time and noticed my leg getting weaker but put it down to running further. I completed my race in March but 2 days later the whole of my left side was numb and burning like the worst sunburn ever. This spread over next few days and I lost the full use of my arm, then to my face and mouth. So frightening. I couldn’t walk up or down the stairs, was dropping everything, and the pain in my eye returned. It took about 8 weeks to recover and a lot of rest and relapses and realising that mind over matter is not going to work! Now you have my history and here is the bit that I hope will give some reassurance. My GP was fantastic, she had me admitted to hospital that day with a suspected stroke. I was seen at the hospital and had a brain MRI the next day and an appt made for neuro the following week. My neuro took me seriously, listened to everything I had to say during a 40 minute appt. He ordered all bloods and x rays to be done that day and a VEP and spine MRI which were done over the next 6 weeks. I have been signed off work during this time and my GP has seen me each time and has even offered that she is here if I need to talk. I saw my neuro last Thurs who diagnosed me with MS which was a massive shock even though my GP had suggested it to me. My brain scan is clear but I failed my VEP and I have numerous lesions on my spine MRI. He has referred me to a colleague who specialises in MS to talk about medication and will register me with an MS nurse. I know from reading your posts how very lucky I am to have been treated so quickly and to have a GP and Neuro who were so caring and thorough, I just wanted to offer some hope that it can happen! Now you have my history!!
Don’t know why last sentence has appeared at the bottom!
Wow Cazhoz!
Thank you for sharing your story and sorry about your diagnosis. It certainly gives hope to some of us limbolanders that there are some doctors that do listen out there.
I’m not diagnosed (?episode of spinal inflammation though my MRI was normal bar non-specific brain lesions) so this post was certainly interesting to me. I’m sure this has come as a great shock to you but this forum is absolutely fantasic for support whether you’re diagnosed or not.
It sounds like you’ve got a fantastic family who are behind you 100% but I’m sure there’s going to be questions that you might find the people on this forum useful for.
Reemz
X
I am sorry you have had this shock to the system. At least you were not kept wondering for years what was the matter, and thank you for sharing your story to give heart to people who are in the same boat.
The sooner you get a dx, the sooner you can get going with one of the drugs that will give you the best chance of keeping your MS at bay (if that is what the neurologist thinks you need.)
It is all such a lot for you to take in, though, as all of us who have had a dx can well remember. Good luck with it all.
Alison
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What a quick Dx you had, I bet you are still in shock! Im not sure what I would prefer, to know straight away or to get so fed up of being ill and feeling like im going mad that by the time I get a Dx it will be a relife? Anyhows I hope your GP and neuro continue to be helpful & supportive and heres hoping some of us get some speedy results, its good to hear theres some good ones out there and that were not all going to live in limboland forever!
Chelle x
Hi Cazhoz I know exactly how you fern, tuff innit. As you can see you are in the same boat as me, but someone pulled the plug and we ont know who or why. I have been DX on 17/5/12. The story so far SYMPTOMS walking like drunk Slurred speech Numb hands Falling over Taking the corners off door Dizziness Cognitive issues-it didn’t help as I ran multi million £ contracts What led to my DX Visit to my GP wo was concerned about my gait GP referred to consultant physio He sent me to consultant rheumatologist same day He told me I am going to hospital Went in on 7/5/12 Had MRI back CT brain Had MRI brain Had LP DX with ms This took 28days end to end Since Had VEP test God knows ow many blood tests Seen neuro suggested tysabri or coax one and sommat else begging with M. I need to have another MRI to check for progression and JC test. It has gone s fast I don’t know if I am coming od going. I can believe I have been DX or have MS, so I am having psychological councelling to get over it and accept it. Hope the info helps That’s me Mike
Hi Cazhoz I forgot to say, nearly every time I emotion what I have got I burst into tears, when I watch my little lad play footie and he asks me if I wanna game, the same. At the min I can hardly walk so it hurts more. Over time and with DMT it will get better, my footie won’t. I may be all over the place at min, but I know the score & it will make me appreciate what I got more and make me stronger And speaking to like minded people helps as they are in the same boat. And have got some great advice thats real. Mike