I am new with a few questions. I have been under neurological testing for the last 2 months. I have been told my neurologist he suspects MS which devastated me, I don’t want an illness that could change my life I want my test to prove I don’t have MS. I m confused, reading through all of the posts and I have read from page 300 why so many people believe they ave MS and refuse to believe they don’t even when told by highly trained neurologists that know more that thy do not have MS, is it D Google that directs people to an MS forum I appreciate Drs can an do get things wrong but some posts I have read it seems that some will not accept they do not have MS and will strive thinking if they see enough Drs one will give them what they want. I am not trying to be disrespectful I am just vey confused and surely one would be rejoicing to be told you don’t have MS and then move forward addressing what ever is wrong and getting your life back on track. If you do have MS one day in the future the proof will be there but putting yourself through endless tests seems very alien to me. I trust the Dr I am seeing what he tells me I will believe after all it s him that has spent many years training, unlike Dr Google. Thank You.
Hi, puzzled i too am undergoing tests and have been told its very highly likely i have MS. The news was devastating to me aswell but i am stll waiting on a LP to confirm. I keep hopeing that everyone is wrong. I am a biochemist and sort of pieced it together myself i even had to ask the dr straight out as he wud not say it. But i am still hopeing its all been a big mistake and i will wake up from this horrible dream! I also thought the same thing when i was reading some posts on the forum but i think some people have been ill soo long with no answers as to why. I think they want a name for it and makes it easier to deal with when they know wat there up against. I hope all your tests tell you that u dont have ms. But if they dont there is lots of support here if u need it. I have found this forum a great place to talk and get really good info from people that understand what your going threw wishing u all the best! Bean t
I think after being troubled by difficult symptoms for a long time with no ‘reason’ as to why can be a very difficult place to be, and trying to explain to employers/ colleagues/ friends can be challenging and the support you get when you are in limbo can wane. I am dealing with a currently undiagnosed neurological condition and have just had a clear MRI yippeeeee I am v v relieved but and here’s the tough bit I still don’t know what’s wrong I still have all the symptoms and pain etc and still need to carry on trying to discover what it is and until I know I can’t treat the cause I can’t be protected at work by disability laws and I still have to just tell people I don’t know what’s wrong and that’s not easy. I have only been in this place since last August so not that long but it’s already become a nightmare and I am at the point of I don’t care what it is I just want to know so I can deal with it and maybe have an idea what the future may hold so I can plan. Hope your clear of ms and you find out soon what is wrong x
Hi. I am not diagnosed nor do i want to be… but i have had neurological issues for about 5 mths and was even admitted to hospital for 5 days. I do not want ms but neither do i want a debilitating something or other that no one can work out. To be told something is going on and to be off work not earning is serious for me to stay on here. This is the closest fit symptoms and still not been completely ruled out. Anyway it is a great forum to air concerns and be supportive for others having the same symptoms. So i suppose what i am saying is that no one on here wants ms but being in limbo for any diagnosis is not so nice and its good to come on here and feel like you are not alone.
Thank you for your reply. I hope that you also receive the news you are hoping for. I can tell there are very caring helpful people on the forum and offer lots of support and my post was not intending to upset or offend anyone and I do understand what you are saying about people wanting answers or a name for their complaint just on some posts it comes across that the only thing some will accept is MS. Nat
Hi I am also in the same position. 4 months ago I woke up in the night with crazy things suddenly happening to my body. I went to the gp and was told it was anxiety. My symptoms carried on and I begged to be sent to a neurologist. I had a brain and spinal MRI and they were fine so I was still branded as anxious. I have never in my life been anxious before all this happened and I can not accept that my hands being on fire, pins and needles, muscle spasms, pain in my eye etc etc are all from anxiety As I mentioned before I wasn’t anxious until these unexplained symptoms occurred. I desperately want an answer to what is causing this. Hopefully it will all settle with me and will turn out to be an isolated incident. It is common knowledge that ms is a difficult illness to diagnose and yes some people may end up with a different diagnosis but until then this is a good place to come and ask for advice on symptoms and lots of other things as many people are going through the same. I’ve had some brilliant advice on here and have managed to control my symptoms by speaking to people on here. It is a place to come when nobody close to you gets what you are going through. We are strangers to one another on here but we have things in common and it’s good to feel not alone. I have been terrified at times over the last few months and without the help I’ve had on here I wouldn’t have got through all these awful things thAt have been happening to my body. If it is proved that all my symptoms are down to anxiety then believe me I will throw the biggest party. But for now I will continue to come on here and get advice. Last week my legs were spasming and cramping like hell. Due to advice on here and reading posts I now have my spasms under control which my neuro never bothered to help me out with properly xx
Bless you anon I can feel how this is affecting you and I really hope you get some answers soon. Maybe I am lucky and I have a GP who is human lol. Fingers crossed i will get my answers also. Nat x
Sorry mat not sure why that came up as anon. You are lucky to have a good gp. If you have read on here there are lots of people who get told this is all anxiety, stress etc. I’m just listening to my own body and know for sure that I wasn’t anxious before and that I’ve never experienced anything like this before. Just so you understand why some people come on here including myself Jo x
Hi to everyone who answered this post. I was diagnosed with RRMS 11 years ago following probably the worst 2 years of my life. I still now all these years on cannot comprehend how I at times coped with all the strange and at times very scary symptoms I endured. Of course we dont want this illness but sometimes life sucks!! From reading your posts I think you should all be proud of how you are managing this time in your lives even on the days when you believe you cant take any more. The lack of control we are often forced to endure both physically and emotionally when facing an unknown enemy thats attacking our bodies is very disabling, but I also believe once we identify that enemy we gather strength and clarity in how we deal with what lies ahead. {{{{{{{{{{{big hugs}}}}}}}}}} to you all, and know that whatever the outcomes of your tests you have people on this forum who will be friends who listen with true empathy because we know in so many ways just what it is your trying to cope with. Joy xx
Joy thank you for your lovely post and I am sorry you are having to go through this. I think what I was trying to get across was the Internet is not the place to give someone a diagnosis, after reading lots and lots of posts here and other sites it does seem people must do a search on their symptoms and the Internet says its MS, those 2 letters then make people believe they must have this disease when in fact the only people that can tell you diagnose you is a Dr. I am not dismissing people’s real symptoms, fears and need of answers. I am questioning how people read something and become blinkered that MS can only be the diagnosis because the Internet says so. I wish you all well in your journey and everyone gets the answers they are looking for. Nat x
Hi Nat, I agree with what your saying, the internet can create a magnitude of problems when people use its information as an unintentional self diagnostic tool. I say unintentional as they start off looking for a clue a hint of what possibly could be wrong and before they realise they have used very valuable time and energy trawling Dr Google and have such a correlation of information they can begin to believe they have found a diagnosis. This can lead to an escalation of emotions and people panic, especially when they feel they are not being supported by the medical professionals they put their trust in at a time when many feel vulnerable, its human nature in many ways. I have a friend who was diagnosed with bowel cancer 2 years ago, he is thankfully now in remission and he and I found great comfort in the forum of a bowel cancer charity pre and post diagnosis, he continues to support others especially newly diagnosed and people like so many others who find themselves unwell and have escalated their concerns by using information available on the internet. I admire you have expressed your views Nat and if it makes only one person struggling at this time to realise that perhaps they are creating more problems for themselves by excessive retrieval of information then it is you they have to thank for that. People will read into things as they choose and voice opinion and that is all you did and I for one agree with all you say as a statement that is your personal opinion and not given as a critasism to any one individual. Please keep in touch and know that you have a place to talk and air opinion on this forum. Joy xx
I also agree with you nat that you are entitled to your opinion. Joy wrote a lovely post, it is so hard when you are going through all this though and I think having unsupportive doctors who are over worked makes it so much more difficult. At first when all this started and I got no support or answers I did go a bit google crazy. I have since stopped all of that as it did me no good, unfortunately it’s too easy for us to go on the internet now and look up symptoms (I think lots of people do it now). As I explained earlier when my post came up as anon we all just want an answer to our probs. I’m a single mum and want to know I would be in a position to bring up my kids in the way I do now. My 3 year old has no father in her life ( his choice) and I am her world. I’m not just speaking for myself but for maybe others going through this and I agree my symptoms may turn out to be something else so no offence meant in my first message. Hopefully you will have your answers soon and so will lots of us x
Jojow I really do understand how frustrating it must be and from the replies I have received it appears that it is the frontline medical persons actually (GP’s) that are actually prolonging people’s uncertainty and impacting on symptoms. Maybe I should be looking at how their dismissal of people’s intial concerns are dismissed, maybe if they addressed the situation from the off people would not be left to self diagnose and be left to become anxious thereby impacting that persons well being. As I said I have a very human GP and I will be asking him the question "why are so many DRs so reluctant to refer people for tests) as I have stated I have not wanted to upset or offend, I am beginning to understand it is the system that is at fault. Thank you all for sharing.
Hi jojow, what a very unsettling and frustrating time your having. I cannot begin to comprehend the concerns that must plague people daily as a mum or dad when their health problems continue without a conclusive diagnosis as I have no children, however I do understand that had I been blessed with children my concerns as a young mother would have unpresidented. It must be very difficult to try and be happy, daft silly mum when inside your running on a treadmill of worry. you have my deepest admiration jo. Im without doubt you will continue to be your little girls world lovely on your good and bad days and once you have a diagnosis will, as a parent find even greater strength and a positively. I pray you will soon be given that. {{{{{{{big hugs }}}}}}}} joy xx
Thanks very much joy. At present a lot of my symptoms have calmed down a bit but tucking me daughter up in bed at night it always enters my head that I have to get some sort of diagnosis for her sake. I would be over the moon if this turned out to be stress related but I’m not convinced, unless a psychiatrist tells me this. Even though you have no kids it still must be a struggle for you. I’ve only learnt to deal with my symptoms by coming on here and reading other peoples posts etc and realising that life still goes on. Thanks for the lovely post and bat I think you asked a good question to begin with as reading through posts it must be confusing and make you think do some people want this disease. My neuro said to me at one point that I don’t want to go getting neurological diseases as they are incurable, to which I replied that I don’t want one but I would like a reasonable explanation as to why I’m getting these symptoms xx
Hi jojow. Neuro humour!!! Gota love they try; although a very good physician my last ms specialist was not blessed with a sense of humour or in truth what appeared to be a personality but he did me proud with my care, suppose there are few of us in this world blessed with everything :). of course you want an explanation the sooner the better lovely, but I also hope in many ways that its not all stress related either or that could be another issue you have to cope with as it can be very difficult to live life thinking you cant cope with stressful situations. Peoples words imprint themselves in our subconsious so easily and yet are so difficult to remove, I personally can testify to that even though I have spent the last several years using alternative therapy treatments to help get in a place where I can pull them out and put them in the bin. I wish you no ill at all lovely, lets hope if it is physical it is something that can be treated promptly and you can begin to live without the worry. In the two years I was undergoing tests I had times when I was really ill and other times when I felt ok, not wonderful but ok if you know wat I mean and your so right symptoms do calm down as mine obviously did and in many ways perhaps hindered a more speedy diagnosis. Anyway lovely, may those symptoms remain calm and a lets hope you get an answer real soon. Joy xx
Thanks joy, my neuro has sent me for a second opinion so will see what happens there. Didn’t really know what to make of mine, he clearly thinks it’s anxiety though, even though I’ve been told by a few experts anxiety can’t cause all the problems I’ve had. I think you’re right that symptoms coming and going mAke it harder to diagnose, or whatever it is I may have as I have learnt not to try And jump to conclusions. Thanks for the positive words Jo x
Jo, i am in exactly same position though i am told its still a virus instead of anxiety. However my symptoms seem to progress each day which i know makes it tricky to diagnose as there is so much going on and i have been told.it could be permanent though. Here’s hoping you get some answers soon x
That does sound like me. I had an I near infection right before this as well which I was told was a virus so wondered at times if this is another virus. Gone on a bit long though now though lol. Hope you star to feel some improvement soon, I’m feeling a bit better at the moment but the odd thing still cropping up. Hope we get our answers at some point x
Sorry meant inner ear infection x