hiya, I recently went to the optician because I had a blood shot eye and the headache from hell (as always) As well as pain on eye movmovement turns out I have binocular peripheral diplopia. I’m always ill. Constant severe headaches, neurologist told me menstrual migraine, how this can be when I’m not menstruating… I don’t know. Guess he was just too lazy to examine me. Sinusitis, ent said I have a deviated septum.and just gotta put up and shut up. Severe and I mean severe backache, especially mornings, rheumatologist said take paracetamol, the clown. All this started after childbirth 4 years ago after losing 2 and half litres of blood. I get constant twitching and flinching and a weird vibrating feeling. Always falling asleep And feel so week I can’t get enough breath in me. I need to keep yawning. I get pain all over and all sorts of odd ailments like pins and needles, especially at night and this awful shuddering feeling that i get awoken by. Ive been referred to another opthamologist or whatever now. Do these symptoms sound anything at all like ms? I had mri 3 years ago for arthritis. Surely it would have shown up or is this not always the case? sometimes I would just be glad I had a nasty brain tumour and died than keep going through this crap, I’msure they thing I’m a work shy malingerer. sorry for the moaning but I don’t care what I got jyst want to know so I ccan’tdo something about it ie at least be believed. thanks
This is so bad my text is playing up. Meant weak and mri. If you can change it pkease? also add I have slurred speech like I drop the middle of the word like I’m drunk - iIdon’t drink tho
cheers for the replies. Most helpful
Hey, don’t get down-hearted with the people on the forum… I usually only read the ‘everyday living’ bit of the forum if I’m honest… just came on this for a little look.
I can only symathise as I had a real backwards route into discovering MS! I struggled walking, had a fall, went to osteo, she wrote to GP, referred to spinal unit, referrred for MRI, referred back to GP, referred to neuro - by that point I was pretty conviced I had a brain tumour too. I had so little idea about what MS was that I was just relieved as my life had gotten so muddled up and I’d had to give up things I loved.
Anyway, don’t be too disheartened and seek advice from another GP if you have to. Also. what did you have MRI’d? I had full spine and It was pretty evident when the consultant explained it to me but he referred my for a head MRI before I go back to him.
Sorry I don’t have answers for you, just wanted to let you know you are not being ignored.
Hi Debster, and welcome.
I’m sorry you were disappointed that nobody replied right away, please bear in mind that weekend evenings are a quiet time on the forums. Nobody here (that I know of) is a paid professional, just waiting to leap into action when they see your post.
Mostly, we are people who don’t feel very well - just like yourself. But other than that, we are ordinary people, who may want to spend Saturday night relaxing - just like anybody else. So please don’t take it personally, if nobody responds immediately, or the same day, even. Almost always, somebody will respond - unless you have a very obscure query that baffles everyone - but even then, somebody will usually reply to say: “I’m sorry, I’ve not heard of that”, or: “I don’t understand, could you clarify?” But it’s luck of the draw how quickly. If you happen to post when the boards are pretty busy, you might get a reply almost at once. But if you post on a Saturday night - a popular time for people to take a break from the computer - you might be unlucky.
Anyway, to your question: yes, it is possible for MS damage not to show on MRI, especially early in the course of the disease. however, in general, the longer symptoms have been going on, the less likely this would be to happen - if it was MS, that is. I.e. it doesn’t stay invisible forever.
I’m not sure what kind of MRI you had last time, for arthritis. Was it of the head, spine, or both? If it was a scan of the spine only, MS can sometimes be picked up that way (mine was!) but spinal cord lesions are both less common, and harder to spot, so a brain scan would be much more useful.
There are literally hundreds of conditions that can cause symptoms similar to those you describe. These range from simple vitamin deficiencies (Have you been tested for things like Vitamin D and B12?) through to rheumatology spectrum disorders like lupus. There is NO definite test for MS (either to prove you have or haven’t got it), so it’s a diagnosis of exclusion - i.e. only when every other rational explanation has been ruled out.
I must say, I have not heard of MS causing a bloodshot eye before. This might either be complete coincidence (therefore irrelevant), or an indication the problem is something else. MS can cause various types of visual disturbance, but because the damage is all internal, in the brain or optic nerve, there wouldn’t normally be any visible signs of injury on the outside. The eye might be “behaving funny” (impaired vision, double vision, can’t focus etc.) but wouldn’t look obviously damaged.
I don’t know if any of this helps? As I say, it’s a process of elimination anyway, so I would play the game, for the time being, and see what the new optho has to say.
In general, GPs have a horror of self-diagnosers, so I would not encourage you to go to the doctor and say you think you have MS. But if you get nowhere with the current batch of specialists (rheumy and optho), you might want to ask if Neurology is an option. And certainly about getting your vitamins checked - which is easy and relatively cheap, and could show something.
The blootshot eye was a coincidence nothing to do with diplopia. Silly insignificancE which luckily helped them spot my diplopia, which is double peripheral vision. I had head and spine rheumatology scans just over 3 years ago, iit’sthe nhs so probably missed stuff. After all it was their fault i almost died so wouldn’t put anything past them. I think diplopia has an actual cause. I take vitamins and my blood work was fine. I doubt anyone would have answered had I not moaned cuz my post was 4 pages back. Don’t expect replies, no one has to do anything for me but it would save people time if the forum didn’t exist if it’s not something people generally use or use little but for those they know. It can hurt to write all this out. It’snot constructive really but then again I probably wouldn’t be bothered to reply to my moanin either ha ha anyways thanks appreciate i
Hi please help?
I am new to this forum & have posted for a bit of advice. I have been having strange symptoms off & on since around January this year. It started with dizziness, being woken up & the room spinning, sharp stabbing headaches & numbness down the left side of my face. These progressed to numbness in my left forearm, pain in my left elbow & numbness in my left hand with pins & needles. I was also extremely tired, when I woke up in the morning I felt more exhausted than when I went to bed. It used to feel like I could fall asleep standing up.
I put the above down to the fact that my partner & myself recently had a baby, sleepless nights ect & your body can do strange things to you when your tired.
But then things got worse, I had two leg collapses, one after I got out of bed & another walking out of my house. My left leg gave way like it was dead & had no bones & each time I had to sit on the floor for a couple ogf minutes before it woke up. I also had numbness down my shins which lasted a couple of days & a electric shock / pain feeling when I sat on the toilet???So I went to my GP who refered me to a Neuro consultant as he suspected I may have MS symptoms. Whilst waiting for my appointment to see the consultant I felt fine, no symptoms, typical.
Well I saw the consultant, I was in with him for no more than 5 minutes, he was very abrupt which made me anxious and I couldnt relay everything that was happening, he made me stand up close my eyes & touch my nose & asked me my symptoms, he interupted me throughout & said he would send me for a brain MRI to check for anything major and that was that. I felt generally worse after the appointment and started having more of the dizzy spells & burning skin like I cant stand my clothes touching it, I also get very itchy.
Today I recieved a letter off my neuro which states that my MRI was normal…and that was it, no date to come back ect. So I phoned the sec who said I have now been discharged with no further action.
Is this right, I am confused, I really do not feel that my symptoms have been looked into properly, any advice on whether I should go back to the gp? ask to see another consult? Im starting to think I will have to just live with these symptoms.
Hi Scrivs. It would be best to start a new thread as your query may be missed on this one. I can’t advise you as I have not been through what you have, but you have my sympathy for your plight. Once you have started a new thread, I am sure more people will respond. Kind regards. Angela x
Ah right, see my mri wasn’t completely normal and that’s why I’vebeen diagnosed with psoriatic arthritic, have a compromised iimmune system. Anyways I feel for what you’re going through scrivs. I don’t think it’s anything to do with your posting here. I’ve not offended anyone, as far as iIknow. I just don’t think people are genuinely interested as they all have their own problems. you won’t get anywhere with the doctors. Think the best thing to do is arm yourself by finding out as much as you can - about all different stuff. I hope you don’t have ms, there’s just something wrong about it somehow. wish u luck in finding stuff out. I know how it can be sometimes. I sit out on life 2 days out of 3 through pain and awake unable to move too … and ain’t caused by norhing it int
You probably would have had a quick reply to your very first post if I hadn’t been away in which case you may not have been disappointed by the lack of response and I wouldn’t have been annoyed by your subsequent reaction, but as I was away and missed your post and have just, rather foolishly, had a quick look on here now (despite being on holiday), yes, you have offended someone - me.
I appreciate that you have problems and are unfamiliar with this forum, but before making wild accusations of no one caring or being interested, I suggest that you spend a bit of time looking back over previous pages to see just how much support, care and interest that many people invest on here for no money, recognition or even, at times, thanks.
Indeed, despite receiving a very helpful reply from Tina, instead of saying thank you for her time and trouble, you immediately challenge her suggestions. Had your reaction been different, perhaps the number of replies would too? And perhaps I would have spent this time offering constructive suggestions?
A lot of people care about this forum. And so I may be the only one posting this, but I bet I am not the only one thinking it.
And now, I am off to enjoy the rest of my holiday - to try and get some energy up for when I go back to voluntarily spending hours every single day of the week helping the people who post on this forum.
Didn’t they just say to me ppl have their own problems and stuff to do? but when I agee I’m awful! I’ve just offered someone using this post help. Iwont bother using this, you know. You people are quite mean, everything I’ve said in innocence and took out of context. I meant no harm. you’re deliberately being horrible. Youre very bitter, bullying is vile even if it is this stupid forum. Stuff this crap
I probably would have replied to your post but found the part where you said you sometimes would be glad if you died of a brain tumour offensive. My dad died of a brain tumour two years ago, and you have no idea the pain and sadness this caused. Think twice before you post such statements please.
Yeah cuz everyone in agony crying out for help knows you personally don’t they. I would have thought that someone suspected of a brain tumour vs ms would have more understanding from you. Sorry Iwas wrong admin - how dI delete this acconut to remove myself i can’tstand this relentless bullying coming through my emailnl, i thought this forum was for ppl facing diagnoses. Whatever it is, I didn’t know you can only mention ms. It does say undiagnosed aftwr all. A lot of my symptoms are typical of a few thing and since I’ve had a lot ruled out there’s only a couple left. I wasn’t here to offend but somehow have. I’m not pc enough so best I leave. I need to close this as itit’s stressful keep getting emails
I’m new here but not to forums in general and I would never expect a response after the way you have approached this. Something like ‘I was just wondering if anyone had had chance to read my post and could offer any advice’ would probably have got you somewhere. I appreciate that you’re frustrated, who isn’t with things like this, but it’s not the fault of anyone on here and you’re asking them for help. Even now, instead of apologising and admitting you’re angry/frustrated you’re having a go. If I had any information I could give you I still would because it’s a horrible situation to be in. Unfortuately, like many in this part of the forum, I’m new to this and haven’t been diagnosed yet.
Well I must say its been a while but you are not the only person who as come on here claiming to need help but clearly have another agenda. You do not have the right to upset anyone on here full stop. If you knew anything about MS you would know that isn’t good. This forum is here for people who need it, like me, who whilst being diagnosed was an essential part, emotional support was second to none. If you do want help, this is the place but if you have an attitude, are impatient and expect everyone to jump the minute you post then this is the wrong place. We are all ill on here - do you actually get that?? Have you any idea what we have been through and what we are going through/facing? Empathy would be a good tool for you right now. I didn’t post yesterday because I was angry at your attitude towards Tina’s post, she is lovely and posts with great common sense. I have posted today due to anger and this is because whilst on her holiday, Karen felt upset enough to comment. If this is how you conduct yourself in real life, then a diagnosis of whatever is wrong is going to take longer than you think. Sam
Can you stop bitching cuz I get this rubbish sent to my email, ok so iIwaited 5 days and made a silly post to illicit replies. Big deal. Calm down. You can’t be that ill if you are able to con inue this barrage of bullying. the only personwho has actually offered anyone any advice here is me now I’ve emailed them to remove my profile for my evil crimes. What I’ve actually done aside from post one flippant remark to boost my post back to the start, is beyond me. Is it possible that someone other than yourselves is ill, I have been diagnosed with long term severe conditions also. Ms iw not the only one, other people suffer too. It’s pretty sick to suggest otherwise, I’veonly stated the truth. I’ve asked for my account to be closed so why keep up the spite? this post actually proves that the only responses come when there is the smallest reason to be spiteful
I, along with a bunch of other ‘old timers’ on here… and especially Karen (Rizzo), spend a lot of time and care answering posts on this board… and I know that the vast majority of people on this board really appreciate our help.
We are ill you know. We do have MS.
But we remember only too clearly what it was like for us before diagnosis, or when we first had a hint that it might be MS, or when we were told it was MS… so we’re only too happy to help.
If a post gets left for a while without a response, it’s simply because we are doing something else… ie living our lives.
Karen, if you check in again hon, continue enjoying your much-deserved holiday.
I’m sorry your experience on these forums hasn’t been as you’d wish. As many people have already stated, these forums are usually a very reliable source of support.
Please bear in mind that your post was held in a moderation queue for some time- which may have given the impression that people weren’t responding. In fact, they probably hadn’t see it yet, as it hadn’t been published.
Apologies for the delay on this front- we are having quite an issue identifying spammers from genuine posters at the moment.
If you DO decide that this forum is not for you- please note that if you go to your account- then to Update Account, you can change the settings in order that you’re not notified every time somebody posts. You can also close your account from there too.
Obviously, we’d rather you stayed, made friends and contributed to our online community in a way that’s beneficial to both yourself everyone who uses the site.