so confusing

Hi, I am new to the site and have just been reading other peoples stories. I feel sad that so many of you are in the same situation as me ‘in limbo’. I have been having problems with balance, several attacks of prolonged vertigo, nausia and dizziness lasting days or weeks, followed by breif intermittant spells lasting minutes occuring two or three times a week and fatigue for some time now. Last february I had a real bad case of “vertigo” and was hospitalized for 4 days. Subsequently due to still having dizzy spells I went sent for some tests at the local balance centre. These all came back normal but was sent for an MRI in Feb 2011. I was called back for another MRI in march 2011. I returned to the balance centre in May of this year where I was introduced to a neurologists who did some tests. Following the neuro otological tests he found focal neurology with brisk right ankle jerk with three beats of clonus. My second MRI scan also showed a number of changes. Thus i was diagnosed with Probable Multiple Sclerosis. I subsequently went on to have a Lumbar puncture, Visual evoked potential and a spinal MRI. Returning to my neuroligists last wednesday i was told that these three tests were negative. He was unable to say if I had MS or not and wanted to discharge me!!! I was very annoyed with this and said I was not happy to just go away without a definate answer. So he said he would refer me to his collegue who has an interest in MS. I came away expecting to be waiting for weeks for a referal. To my surprise i received a letter yesterday requesting i go for a MRI with contrast. I was pleasantly surprised when i rand for an appointment to be told they had an appointment for me today, so i have been and had the MRI and now await the results from this. Does my story sound familiar to anyone and if so what was your outcome. Thanks for reading this im sorry its soooooo long. x

Hi From looking at all the posts onhere your story sounds very similar. I think I am in a minority because I was diagnosed only a few days after seeing a neurologist for the first time. On my MRI there was evidence on both my brain and spinal cord that meant they didn’t need evidence of separate attacks. They carried out a lumbar puncture to rule out more obscure things. My symptoms respond to steroids which my new neurologist told me was consistent with ms. At the moment my issue is i am up and down like a yo-yo. I was told when I was in hospital at the end of june if i didn’t improve when given steroids they were not going to let me out of hospital in sheffield, If I improved a bit I would be transferred to a rehabilitation ward in lincoln (which is near my home), and if I improved a lot I could go home. I improved a lot and got home which was brilliant and I have got back to work part time. Since then though i have gone up and down with new symptoms coming and then disappearing a couple of weeks later. I have had two debilitating episodes one lasted a couple of days and went of its own accord, the last one was over a week. My GP wanted to admit me to hospital for intravenous steroids but I managed to get her to agree to agree to an oral course which has worked really well and isn’t nearly as strong. this is the best I have felt in 6 months no new symptoms and all old ones dramatically improvedI feel almost normal and I am just hoping it will last longer this time. One of my main symptoms has also been really bad balance. Sorry for such along and rambling post in response, this is the first time I have posted anything. The one conclusion I have come to over the last couple of months is that everyone seems to respond to this in different ways, you can’t second guess what your body is going to do next (neither can the doctors) and you need to live for the good days.

thanks for your reply louise, everones story is so different. it seems as though it is a very difficult illness to diagnose. i am pleased that you a responding well to your treatment and you are able to go back to work. i am just waiting for an answer for my symptoms one way or the other, it makes you feel like you are going crazy at times, x

Thanks for that. i am not surprised you feel like you are going crazy at least if you know what is wrong with you you can learn to deal with it and you can turn round to other people and explain why you are having problems. Most people are very supportive if you have ms but if you are undiagnosed you won’t get that the same level of support even though you are having the same kind of symptoms. My big limbo thing is what type of ms I have if its relapsing or progressive they don’t know yet… Affter worrying about it for a while I just decided not to think too much about what could happen and concentrate on enjoying the good days and since making that decision I am happier and get more enjoyment out of doing things than I did before I was ill.

Hi, and welome to the site :slight_smile: And well done to you for sticking up for yourself with the neuro :slight_smile: You’ve got a good result - an MS specialist is more likely to know what’s going on and should be able to offer better support should it be MS that you have. General neuros aren’t necessarily aware of changes to the diagnostic criteria for MS, or some of the statistics, so they are likely to be more cautious overall I would think. The facts are that not everyone with MS has spinal lesions. Same goes for positive VEPs. Same goes for positive lumbar punctures! The important facts are that you are having so-far-unexplained neurological symptoms, you had a positive clinical test, and your MRI was abnormal. There is definitely something going on! Let’s hope this new MRI and the new neuro will get you some answers. Karen x

thanx karen, I am so hoping that the specialist will take me more seriosly and understand that it is important to get an answer as to why i am having these symptoms! I have learnt to be strong with medical people ever since i had my 1st son 21years ago and he was diagnosed with Cerebral Palsy! I have learnt over the years that you get nowhere by just nodding your head and agreeing, unfortunately I had to learn the hard way but I definately dont hold no punches now! :lol: I have read about negative VEP and LP in MS sufferers and this has also made me more determined to fight my corner and make sure I get an explaination. I worried that researching into MS too much may make me panick about the future but I feel that by doing this I am able to understand the “proffessionals” more and put my point across feeling I know what im going on about (well a little bit anyways). Like you say lets hope the new MRI shows somethng more positive and I will get a definate answer when i finally get to see the specialist. Thanks for your post, Viki.x

Hi Louise< you are doing the right thing by being positive and enjoying your good days. What good will it do you to worry yourself to the point where you are not enjoying them? I hope you get a clearer diagnosis soon and you continue to be strong. Take care and keep me posted about how you get on. Viki.x

whats going on wrote:

I worried that researching into MS too much may make me panick about the future but I feel that by doing this I am able to understand the “proffessionals” more and put my point across feeling I know what im going on about (well a little bit anyways).

Reading about MS can be very scary, so you need to keep one thing very firmly in mind: “MS is massively variable; no one gets everything and even the things that I do get might be very mild.” Knowledge is power - go for it :slight_smile: Karen x

Thanks Viki. I hope so too I know that this is going to be a long journey. I had a couple of down days after I was diagnosed when I though why me but I immediately thought why not me? Life isn’t exactly fair. I don’t want to waste my time feeling bad about it because it isn’t going to make me any better. I made the conscious decision to be positive and and that has made me feel more positive. I have bad days but I really appreciate the good days. I think it baffles my friends that I got so excited when I could use a knife anf fork again!