@hayleyc85

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hayleyc85

HELP WITH SYMPTOMS

Morning All, below is my story, nobody has offered me any advice other than possible virus or vertigo but thanks to having 3 months with no help i decided to do some research and i've found myself here. Can anyone offer any advice as to if i could have MS and how i get taken seriously? End of November i woke up and jumped out of bed and immediately fell over, my legs couldnt hold me and my balance was cock off, i thought id just got up too quick, but it happened another few times before i left for work. Driving to work i couldnt help thinking that the white line in the centre of the road had moved, and i was clipping kerbs (really shouldnt of driven i dont think) when i got to work, (i have been able to type without looking at keys since i was 18, im 30 now) i couldnt hit the right keys, everything felt and looked like it had shifted to the left a few inches, couldnt see keys on my phone or anything. Additionally felt dizzy, balance was off, words felt like they were falling over each other and i couldnt do jobs i have been capable of doing my entire adult life. I went to the gps that day and they said i could have a virus or vertigo. I left without any medication or anything. I continued to struggle, unable to open bottles, my right side feeling like it needed to over compensate to be able to lift things, confusion, frustration and fear. I visited A&E the following week as i still felt the same, they did a million tests on me but said they couldnt figure it out. at this point it was the feeling everything had shifted right, and my co ordination for example if i tried to touch my eye, i would poke it because it felt like it had moved, that was the issue, i was not longer dizzy but felt like i was getting better in the sense of getting used to where my vision was now, still walking into doors where i was misjudging gaps etc. They sent me to a neurologist who again said she couldnt see anything wrong, maybe a virus but would send me for am mri just in case it was a stroke. I have had this now and been told my results are with my gp, i cant get in for two weeks but my symptoms have changed and since my new one last week. (vertigo when lying down and getting up, and a vibrating pulsing senstation in my bottom and legs when i bend my neck) i can see a lot of similarities in these and the symptonms of ms. i am taking all the above info and the below list of ailments to my gp. The balance and sight issues are 'better' but i feel i have just got used to them, not that they improved. I am left with the following ailments Lack of conentration fatigue confusion bad memory vibrating when looking down pins and needles in right leg dizziness when lying down and getting up sensitive to bright lights and loud noises constant headaches clumsy sensitive, easily upset angered Can anyone offer any advice? Im going crazy stressing out. I assume if my MRI results are clear, they will kick the idea of me having MS out, even though i read you dont soley diganose it on the mri results? What do i need to stress to my gp?

fendercali

@fendercali

Hi hayleyc85 Sorry to see you're having a hellish time of it at the moment. The main problem I've seen when it comes to diagnosing is that it affects every person differently. It can also be confused with other illnesses due to the varying symptoms. Best thing I can think of is to detail my road to diagnosis. I was 20 and lost the feeling in 3 fingers in my left hand but that was all. Went to GP who said it could be a trapped nerve so to to keep an eye on it for a few weeks and if it still stuck around it could be neurological. 3 or4 weeks later it had all gone back to normal so thought nothing more of it. Then a few months later I had a fall that thankfully resulted in no injuries but within a week of this I lost a vast majority of feeling down my right hand side and started suffering dizziness and double vision. This led to a referral to the neuro ward who wanted to do an MRI. This came back as showing multiple scarring but they wanted to be 100% sure so sent me for a lumbar puncture. This showed white blood cells in my spinal fluid which apparently shouldn't be there and that resulted in my diagnosis. Based on that it is possible they are waiting till a second event but obviously that won't help you much right now and won't treat and attempt to prevent future attacks if it turns out you have MS. I think the only way to be positive is with this combination of results so I fear you may just need to wait till MRI scan results come back. It's great that you want to be proactive but think you will just hit road blocks until this happens. I hope this info is useful to you David

hayleyc85

@hayleyc85

Thank you David, that does help. I just feel very lonely at the moment and am not happy with the words 'its just a virus' i keep getting. but it seems even if they Gps did agree my symptoms sounded like MS, i would be pretty far off a diagnosis. I know my MRI results havent warrented me an emergancy appointment but i dont know if leigions or scarring would warrent that anyway? Its a confusing times. Thanks for the words :)

cameron

@cameron

Well, there's nothing to be done for the next fortnight (except that you should keep a detailed daily symptom diary in a form that you can hand over to a doctor), but when you see your GP and if you're not satisfied, you could ask for a private referral to a neurologist. Not cheap but for c£150 you should get a lot more attention. And you won't be paying for an mri, which I guess is the most costly of the tests that can be done. If you do go privately, as soon as there's a diagnosis you can switch back to NHS. That's what I did. xx

cameron

@cameron

Just one more thought. I have found that the formula to gee up a doctor into action is: 'I'm not functioning in daily life'. (Seems to worry them!) xx

hayleyc85

@hayleyc85

Thank you cameron. I actually get £400 a year for private health care so that is a route i can afford to take. I have not seen my GP at all about this issue as on the day it happened i saw a locum doctor and then have been seen at hospital/neurology since. I would like to see my family GP (who has seen me since i was born) and see what he thinks, he has been the one i have gone to in years prior with my bad headaches and i do trust his judgement. He knows my pain threshold is high and that i am never willing to skip work so going after a diagnosis for any unwholesmome reason as i imagine they are faced with that quite a lot (poor them) I am pestering my doctors pereidocally to try and get in earlier as i am sick with worry although i know they could never give me an answer there and then! I am not functioning with daily life for worry for myself and my son, im terrified my concentration or lack or, or my vision with boot off again when im driving with him in the car! :(

cameron

@cameron

@hayley85 - as you're going through this nightmare, hold on to the thought that if it does turn out to be MS (my neuro told me pre-diagnosis that it could be one of 16 conditions!), it now is a manageable condition. It's not a death sentence. The BIG transition is moving from being totally alone with your thoughts and fears to a situation where you're on treatment and being actively monitored. From the time you start on a drug, there'll be an MS nurse to talk to and you'll be recalled every so often for check-ups. bloods etc, plus regular neuro appointments. Management of MS (in my experience) involves quite a few medical teams - I see a physio regularly and in the past have been to various symptom clinics and they've all been marvellous. Super people, all willing you to live your life as well as possible. None of us like the club we've been forced to join but once you're in it, you can begin to live your life again. xx PS Remember that stress can switch on neurological symptoms like a tap. What would you do to get rid of butterflies before a job interview? Not easy, but getting yourself into a relaxed state would be a start. Similarly, neuro symptoms will flare up if your body and mind are in an agitated state, so do all you can to switch off. Concentrate all your thoughts on MS once a day by filling in your symptom diary, then close the diary and stop dwelling on the maybes and perhaps for the next 24 hours. Chocolate? Wine? Massage? Facial? Good film? Indulge whatever makes you feel good because that will help the symptoms.

hayleyc85

@hayleyc85

Thank you Cameron. will keep all updated x

hayleyc85

@hayleyc85

Hi Kiki. Thanks for the message, i went to the optitians within weeks of the funny turn. Strangely enough its the only time i have been where they have said i dont need glasses! My eyes are healthier than they have ever been before. I was hoping more than anything that it was my eyes :(

Stumbler

@Stumbler

@hayleyc85 , "it's a virus"!! What a cop out. They might as well say that they haven't a clue and be done with it! Given that a GP's appointment is a couple of weeks away, could you try asking your GP Practice to get a Doctor to telephone you? This is normally a quicker option. And, if they want to see you, they'll find an early appointment for you. :wink:

hayleyc85

@hayleyc85

yes im being hit with lots of Nos which is really annoying as my mum has lung cancer and the care she gets from the very same doctor is impecible! its quite frustrating telling her i can get in for weeks when she can be seen instantly even for an ingrown toenail! I think i will have to wait it out, i understand googling symptoms was the worst thing i could of done but it was my only option being given no help and not wanting to stress my parents or family out! Think i will get my GP to refer me to neurolgy and pay for private appointment. I really dont fancy seeing the one i saw before, its so frustrating, everyone i have seen seems to give me the impression if i had suffered loudly and stayed off work and become dependent on others i would of got more attention, but the fact i went back to work and tried to re learn my skills and how to walk and talk has become a hinderance! what the helL!

fendercali

@fendercali

@hayleyc85 everything is a virus apparently. Go in with a broken arm: Virus! Lol. Google is a great source of information but you need to take it with a pinch of salt. Everyone is affected differently so someone else's symptoms and story will be very unlikely to fit your own. When my eye went dodgy after optic neuritis hit it I avoided driving so if you can do that it's probably a good idea. It's so frustrating playing the waiting game I know but if the MRI is not conclusive then I'd ask for a lumber puncture as mentioned earlier but the MRI usually gives a clear view of it all. Due to a lack of diagnosis I would try not to get too bogged down with the whole having MS thing. You may be lucky and find out it's something else so I'd enjoy that aspect of not living with that label for a while(not exactly easy I know). David

potter

@potter

My neighbor has gone through what I would call two relapses and had a MRI with contrast each time but no lesions have been found. Now she plays the wait and see game, she is changing her diet and cut out the caffine . Potter

hayleyc85

@hayleyc85

Yes i fear that may be where i currently sit if my MRI is fine. I am active, run races, eat well, dont drink or smoke, so i honestly couldn't see an issue with diet. Thanks for the message :)

Angy_Lo

@Angy_Lo

Hello Heyley, I can totally understand the frustration with it, it takes to some people to be diagnosed years. (not to scare you with it) What my advise would be for you is to find a health insurance provider before any type of diagnosis. It might speed up the process that was an advised given,and missed by me. I would like to ask you where are you located btw? One of my first symptoms was double vision and they straight checked and ensured that there was nothing wrong with the eyes nerves and pushed me to MRI which showed quiet a few areas of inflammations but still they just gave me a more than 50% chance to have MS after 2years I had another symptom which was the loss of sensation on the face and head. It did not stop me from anything, cause of excessive stress my left eye was affected and the vision was down to 50%, when I went to the consultant and she confirmed that I got MS, I can say I felt blessed. I know it sounds weird but I prefer knowing what I have to deal with and just find the way how to deal with rather than keep fighting of a diagnosis and there are worst things out there that might had been. Yes it has affected concentration, focus, I feel fatigue, imbalance and few other things, but I learnt about my limits and not giving up. I hope all goes well for you and you get an answer soon. Do not ever give up into your life and things that makes you happy. It does help talking about it and if you need anything I will be here. :) Kind Regards Angelina

hayleyc85

@hayleyc85

Hi Angenlina, Thank you for the message. I am in Hull/England. my gps are normally very good and im hopeful for some help and answers when i finally get to see them, its the neurologist i saw that sort of made me feel like an idiot. I do have private health care with my work, so i am planning to see my GP, and then ask them to reffer me back to neurology and pay to see a private consultant. What do you think? i went to have my eyes checked whilst waiting for my mri appointment to come through, i really want to make sure iv covered all bases before seeing anymore professionals as i got the impression they werent thinking anything serious had happened. Until the vibrating sensation started, i had convinced myself i had had some sort of stroke, so im not sure how i feel now my symptoms aliken ms, but then again i havent googled any other ilnesses so perhaps i am barking up the completley wrong tree, who knows. I dont feel like im coping very well, and that whatever it is is debilitating me, i dont feel safe driving with my son in the car, and im really struggling at work, i am in a senior role with people coming to me for guidance 24/7, where i am normally confident, i am struggling with the simplest of tasks. I have had a headache constantly for weeks, and prior to that maybe have them 75% of the time anyway, my gp is aware of the headaches so hopefully i will get some assistance. xxx

hayleyc85

@hayleyc85

Also, as mentioned im quite active, running, gym and dancing, last night at dance class, there was lots of head movement, i found myself with a runny nose and something warm down the back of my throat that i could taste, what could that be?

Sonia1984

@Sonia1984

@hayleyc85 sounds like post nasal drip from your sinuses. I had an issue with this during a relapse I had. Sometimes it can take awhile for a diagnosis. I was going to a GP for years complaining of headaches I even requested an MRI and was told it was not needed. Stress will aggravate and trigger symptoms whether you have Ms or not. It's easier said then done to not be stressed when it concerns your health but you need to find things that are going to relax you and comfort you while your stuck in limbo land. Not sure if you have been to a Rheumatologist yet but there are other auto immune diseases that can attack your central nervous system. They can run some bloodwork while your waiting for some answers just to give you some peace of mind and rule out anything else. Also you could get your Vitamin D levels checked. Document all your symptoms and even if your MRI is clean stay on them to rule out everything. I only got a diagnosis because I kept harassing the hospital during a relapse and they got sick of me coming in, only took since I was a teenager to get my answers. So be patient and persistent and you too will get your answers.

highheeledfagin

@highheeledfagin

I agree about the post-nasal drip as it's something that I've had for years - I sometimes get nosebleeds at night and am usually alerted by the taste of metal in my mouth. The actual gush doesn't start until I sit up.

Angy_Lo

@Angy_Lo

Hi Hayley, Going private I think it would help speeding up a bit the things, I believe. When I first went to the hospital about my double vision I had about 5 doctors talking and even asking me if taking medication would help me, on the second meeting after my MRI scan they asked the same thing and when I asked them what was all this about and if the MRI had shown anything the answer was "yes you had some inflammations possible MS" and straight asked me if I had any idea of what was and if I had googled it before. I am not English and those terms were not of my knowledge. So it was scary, once I went home and googled everything I start feeling pain that did not exist, started getting paranoid even after 2 years till I had my second relapse and then the second MRI showed more areas. That moment I felt relieved. I know what I have and I just learnt how to live with it. What is good, what it could trigger it and for sure stress is the worst. Talking to people about it, it did help me a lot. Also thinking of my priorities such as my family and my health aswell, above any non sense thing did help. Do not google much about MS most of the things I found was people in pain, and really affected from MS, but do not forget that each of us has it differently. Is not the end to nothing, is just a beginning of something that we need to learn to live with it. There are new medications and treatments coming on board. We have to be strong and positive. Possibly all these might sound like I dont have the feeling of what is MS all about and might sound unfair to others having the aggressive form of MS. MS has not affected my movement as much, just an imbalance but it did affected my eyes and concentration and memory. I do struggle with my job as an accountant but I do not want to give up on anything. So do you, do not let anything take you over. Keep your positiveness to max and keep smiling to life and your little son :) Hope all gets better. Angelina

hayleyc85

@hayleyc85

Thanks all, only a few more days til i get to see my gp! the vibrating is driving me mad so much so i keep jumping off my chair. 4th day of feeling like my head is in a vice also. I feel like if i could get hold of a firearm, i would sort this headache out once and for all. That should gauge how bad i feel. someone mentioned if it was ms, my option would be able to see damage. Would they see this without looking? i went to get my eyes tested and they said i didnt need glasses. I was just wondering if i dont have optic neuritis does this rule ms out completley? I have gathered from all your lovely messages that there is not a rule for ms, but i know for example the spinal tap is a definate yes or no test, whereas i dont need to have issues showing on the mri, or i dont need to of suffered balance issues. It seems a real minefield and im not hoping for a diagnosis or even any light shed via my gp. I have made lists after lists of what had happened to me but feel like i may of missed things because i thought i had had a stroke.

RachaelG

@RachaelG

Hi, Hayley - I had the weirdest first presentation - extreme fatigue, collapse, personality changes -I spent a month in hospital, had MRIs, lumbar punctures, they thought it was ADEM, or a brain tumour. MS was down the list, but by the 3rd MRI it was diagnosed. I'd agree [email protected] that seeing the optician is a really good idea, but it may just be waiting for the MRI results. Rachael

hayleyc85

@hayleyc85

Hi Rachel, I have already seen an optician, but my result was fine. I was wondering if they hadnt seen it is it not there, or would i need to say 'i think i have ms' check my eyes. I have an eye test, and MRI under my belt for the GP's appointment along with a list of ailments that could send someone to sleep! Hoping for some help or at least a referral back to neurology so i can go private. x

Angy_Lo

@Angy_Lo

Hi Heyley, It does not mean that if you dont have optic neuritis you dont have and MS. What they have said to me in the first place was that as I did have only double vision, what it suggests is that might had two things at the same period meaning MS that had affected the optic nerve plus optic neuritis triggered that moment due to the inflammations the MRI had shown. I did not stick with the GP as I could not handle the double vision and taking any answers just that might had been infection. I went straight to the eye casualty team at the hospital and they moved things forward for me. I do see your need to be referred to neurologist, hope the GP does that for you soon. Best of luck x

Sonia1984

@Sonia1984

@hayleyc85 I have had Ms for probably 13 years undiagnosed and I have never experienced optic neuritis. I have had double vision but it was due to inflammation of a different nerve in my eye that controls the movement and pupil dilation. My optic nerve has always been healthy and my prescription so minor that Ms was never suspected from my eye tests. The problem with Ms is no two people are the same. I use to get upset as with any other disease your given an expected outcome but with Ms it's so different for all of us. The most you can do while sitting in limbo land is be an advocate for your own health, demand the extra testing and be on top of t. Take control of what your capable of controlling while you wait for answers.

hayleyc85

@hayleyc85

Thanks again ladies, i guess im anxious of giving my list of symptoms and sequence of events and getting nothing. I dont think saying iv googled or think i have ms is the best thing to say to my gp is it?? I will only tell the truth and if i dont get the same outcome from the gp do i then mentiom a test for ms? I really dont know what to do for best. Dont want to look like a hypoconriac but also dont want to be dismissed for another 3 months of limbo.

hayleyc85

@hayleyc85

Hi all my mri shows signs of legions on my brain so they do think its ms. Iv been reffered and booking to go private tomorrow. Feeling sad but releived that someone believed me and i had some evidence that proves what i thought. More waiting.