There’s a good reason our neurologists and MS nurses warn us not to google MS. A tweet went round recently with a link to a website that promised to diagnose you with MS or not, just by answering 12 simple questions (here).
I took the quiz, with the knowledge I have already been diagnosed with highly-active relapsing MS. The website’s Androctor Anna, however, gave me unexpected news – ‘I screened you for multiple sclerosis. Based on your answers, you don’t fit the diagnostic criteria for the screened disease.’
I admit, when my neurologist first diagnosed me with Clinically Isolated Syndrome, which may or may not lead to MS, then told me not to look for answers on the internet, the first thing I did when I got home was pour myself a stiff drink, boot up the computer and surf. Endlessly. I’ll bet most of you guys did too.
I can laugh at these quizzes now, but if I had found them back then, would it have been a more serious matter? Would it have reassured me? Through trial and and a lot of errors, I eventually stuck to only two websites – The MS Society and the MS Trust. Friends were just as naive as me though – my inbox was flooded with links to various websites. One admonished me for drinking diet Coke, whilst others offered amazing herbal cures or secrets to beating MS, if only I paid hundreds of pounds for the privilege.
More worryingly, other websites chastised me for putting sun cream on my son. By ‘denying’ him vitamin D, I had unwittingly increased his chances of developing MS. And it’s not just internet websites. Have a look at some of the books for sale about beating MS:
- The Hippy Guide to Eliminating Multiple Sclerosis (Sugar Diet Illness)
- Talking Back to MS – How I Beat Multiple Sclerosis Using Low-Dose Naltrexone
- Fighting the Dragon: How I Beat Multiple Sclerosis
I’m sure some of these books have merit, but MS is still an incurable disease. Providing false hope through books, diets or remedies is cruel. MS can be managed, not cured. And are we under pressure to fight back at all costs, rather than concentrate on disease modifying drugs and adjusting to a life with MS?
One thing is certain though, where there is illness, you can be sure there are people out there making money off the back of it.
those books drive me insane!! its daft worded titles like that that give false hope to people and often stop a person from getting help from someone who actually knows about MS.
talking to a friend online, who really does sound like she has MS, she is in denial about what doctors say and instead goes to a quack doctor that she thinks has cured her because the symptoms have gotten better or disappeared. she doesn’t listen when i say she needs to go back to the neurologist but she doesn’t want a confirmation of having MS because she doesn’t want to lose her driving license :/
7 years later, i am still getting people telling me i should try the newest things. when the whole liberation treatment thing was in the news, family wanted me to get it done, um no :p and now the studies are saying it does nothing, would have been pointless and possibly really dangerous
sorry long ranty commeent :p
My point exactly! And I say that as a trained homeopath. I would never ever offer to cure a patient of mine. But I know of homeopaths who do and it gives us a terrible name.
In my experience, homeopathy is best for adjusting to change and the emotional effects of it.
All these books and cures drive me bonkers. Managing MS, yes, not curing it. I can’t stand that people make money from this!!
Ranty reply, lol.
X
it does all come down to people wanting to make money off of people that are uninformed :/
Definitely. Back in the 70’s, my mum was offered an MS cure for my dad. It was some kind of serum from the Eastern bloc or something. She handed over most of her savings out of sheer desperation. She was never given the serum. Sad really.
X
that is really sad 🙁 you still her about people doing that today 🙁 people are desperate for some kind of cure either for themselves or a loved one
Yup. Still happens now. It’s horrible.
X
Well I took the test, and good news for half a second, I don’t have MS, Imm I thinks I best tell the doctors they have got it ALL wrong lol !!!!!!!!!!!!!!!
Oh yes, I’m sure my neurologist would LOVE this website, lol. I don’t think I’d be very popular!!!
x
Yay, apparently I don’t have MS either! I’m better tell my neuro to throw away the MRI scans!
Whoop whoop!! All that wasted money, when we could just have asked Dr Anna, eh??
x
Oh joy – I (still) might have MS. All those expensive MRI scans and 50+ tysabri infusions., NNot to mention rebif, physio sessions haven’t been a wate of precious NHS resources. Seriously though, I shudder that people (prob those without the benefit of the NHS aka Americans) might think that this is a quick and easy and free way to get a diagnosis of what we know is a life changing condition which needs proper knowledgable support from real experts.
Exactly! It’s worrying that something to serious has been trivialised into a quiz. It kind of blows my mind. I thought it was a joke to start with. Well, it is, but some people could be easily influenced by this rubbish.
x
Well according to Androdocor I don’t have it either! I wish!
Sam x
Yay! Join the club, lol. Stoopid quiz. Stuff like this should be banned.
X
Googling our syptoms is never a good idea, think I’ll stick to the proffesionals I’ve died twice already after googling 🙁
Couldn’t agree more!! I’m sure if my cat took the quiz, she’d be diagnosed with MS, lol!
X
Nope, don’t have it. Willchuck out the wheelchair, sticks, scooter, tena ladies – nomore need !
Congrats! MSers of the world unite!
X
Well i just took the quiz + was told, yes i do have MS. Its a gud job i already knew because i think that’d be a horrible way to find out it might be a possible explanation of your health problems, especially if its givin out incorrect answers.
Know what you mean – it’s ‘curious’ when you’ve already been diagnosed, but what about people still searching for answers?
x
Hallelujah!! I’ve been cured!!!! Am going to sign up for a marathon
I’m off skydiving! Then a trek along the Great Wall of China…
x
well I used that to actually check if it was possible I could have it after a few unexplained problems because my mom has it and my dad thinks I do too how do I go about getting an mri asap
Hi there,
Really sorry to hear that. I’m not sure where you live, but here in the UK, the first step is to go to your GP to explain all the symptoms you’ve been having and ask them for an urgent referral for an mri and appointment with a neurologist.
The MS diagnostic period can take months, years, so it’s vital to start the ball rolling. Also, if it turns out you do have MS, the sooner you start disease modifying therapy, the better.
Hope everything works out well for you.
X
Well according to Doctor Anna I have MS, it’s a shame in a way that real doctors don’t have a proper questionnaire instead of choosing to break you up into different parts and send those parts to different “specialists” who seem unable to connect the dots 🙁
A very good point Donna! I know what you mean. I think until there is one definitive test for MS, this will continue 🙁
x
What is Clinically Isolated Syndrome
Hi there,
Essentially, it’s when you’ve had one recorded relapse. What they say is that you may never have another one, so it is not multiple sclerosis (for which you need to prove that it affects more than one area of the brain). So until you have a second relapse, affecting a different part, you remain with the clinically isolated syndrome tag.
Hope this helps!
x
I answered yes to all of the questions but Dr Anna says she can’t interpret my answers.I have SPMS.Never mind, Ian Duncan Smith said “Parkinson’s and MS are recoverable.”
Apparently they are – guess that’s why we have to be re-examined by the DWP, despite a lifelong, degenerative, incurable illness!
x
I have been having an odd sensation in my legs for some years now, it only occurs when I’m in bed. I say odd because I don’t think tingling is an apt description. Recently I had blurred vision that lasted a few seconds. There is M.S. In my family and I had an MRI many years ago when I experienced numbness in my legs. My neurologist gave me the all clear then. I have also been having urinary problems recently and suffering with constipation. I also have Crohn’s disease which is more likely the cause of the constipation. I am 58 years old and aside from the Crohns enjoy good health. Quite frankly I’m silently freaking out as I know first had what M.S. can be like, as my mum, uncle and auntie had it and my cousin does too. I feel I can’t speak to anyone about it as I don’t want to upset them. I intend seeing my doctor but am also afraid to do so in case it is bad news. I would very much appreciate some feedback.
Hello there,
I’m really sorry to hear what you have been going through.
First things first, freaking out silently is way more horrendous than going back to your doctor. I know you went years ago and had the all clear but it may be time to go back and ask for another one? Even if it doesn’t show up MS, and I hope it doesn’t, it will at least pave the way to allow your doctor to explore other reasons for your symptoms?
Believe me, I went through hell and I was actually ‘happy’ to have a diagnosis at the end of it all. At least I could then access treatment! And that’s at the heart of all this, the sooner you start the ball rolling, doctor-wise, the sooner you can get the help and advice you need.
I know it’s awful but even though your family members have a history of MS, don’t think it will be the same for you. My dad had primary progressive MS and died from complications at the age of 35. I have MS and have had the most incredible treatment. I’m still working, studying and raising my son and life is good.
I really hope you can find some answers.
Let me know how it goes? Always here if you need me 🙂
X
Hi. I’m seventeen, and I’ve been having these symptoms for a little less than a year now, and they’ve been progressively getting worse. At first it started with my right leg, but now it’s both. I have attacks where I lose the ability to move one of my legs (the entire leg, it’s only once happened with both at the same time), there is a tingling, searing sensation, and it lasts ten to forty-five minutes. Walking around normally speeds up my recovery from these attacks so that its ten to twenty-five minutes, but it’s incredibly painful. It happens multiple times a day (one to four times normally, but it’s been as bad as four to eight times on bad days), and appears generally at random (though strenuous exercise, or staying still for long periods of time trigger it more often), people see me limping around all the time, and I’ve developed some vision problems. Everything is so blurry, and my vision is getting increasingly worse (this started around the same time my symptoms first appeared), it’s also painful to close my eyes, because it feels like my eyes are rolling in weird directions (since when someone closes their eyes they roll back), I have bad spasms (A typical spasm includes my face contorting, blinking, my abs moving, my arms violently flailing, my shoulders rolling, and one of my feet stomping), I normally get these spasms over two hundred times a day (yes, there was a test at one point to find out how often, and it’s only gotten more often since then), I have gotten notably worse at remembering things, and it’s affecting school. My neurologist hasn’t been able to figure out what’s wrong with me, and the Internet’s been no help. I’m starting to get really frustrated, and desperate, so any ideas would be amazing.
I also forgot to mention that I have gotten worse with coordination, and I’m always walking into stuff even though I can see it (with the great help of my glasses), though my little to no motor skills can be explained by my executive functioning disorder, everything else can’t though. It’s frustrating to not be able to remember what’s been said to me a few seconds ago all the time, and not be able to remember something over three days ago. Period.
Hi Emma,
I wrote a long reply to you and deleted it by mistake, so sorry for delay! First off, I want to say how sorry I am to hear what you have been going through – it must be really frightening, especially as you’re so young.
You don’t say whether you live in the UK or America/elsewhere and they have very different health systems, but I’m surprised you haven’t been referred for further tests by your neurologist. Perhaps you can get a second opinion or visit your family doctor/GP to see if they can help you navigate your way through the healthcare system (mind did a fantastic job).
Also, it could be worth visiting your optician – they’re trained to know about MS vision symptoms and may be able to guide you.
Most importantly, are you having support from your parents? As the mum of a 17 year old, I know it can be tricky to talk to your parents, but it sounds like you’re holding a lot of stuff in. If not your family, is there a teacher at school you can speak with?
You really need emotional support right now – could you let me know how you get on? If there’s any advice I can give, I’ll try. I wish I was a medic and could help more.
Bxx
I live in the US, and let me tell you the medical system in the US is faulty at best, though my view may be a bit biased. I’m autistic, but I have a much higher than average IQ, and I managed to learn the necessary social skills in order to function in society without others knowing (though it took me until I was around thirteen to master them to the extant the rest of my peers have). Due to the discrimination against autistics, especially by doctors, finding one who won’t put me down, and say I’m nothing, but a piece of trash has been particularly difficult. Additionally up until I was fourteen trying to prove to my Dad that I’m not some mistake, so I don’t have the best relationship with him, my mom is a total control freak that goes through my phone every night, and is too paranoid to let me out of the house for more than just school, and the discrimination against autistics has made it next to impossible for me to trust any teachers. I’ve had teachers, and classmates abuse me, and teachers have made fun of me, and taken advantage of me at best, so no, there is no one to talk to, or that I can trust. I’m not allowed to have friends as it is, because my mom is so scared of what will happen to me if she doesn’t keep me locked up, and supervised 24/7. I also think she’s too scared to risk other doctors too. I’ve been trying to get her too, but it’s totally hopeless. That woman is as stubborn as a dead ox.
Hi there,
Right, so that makes things a lot more difficult. What happens when you turn 18? Would you be able to assume responsibility for choosing your own healthcare options without consulting your parents, so you can find another neuro? Or does all the paperwork still go through them (I’m a little hazy on your healthcare system).
Ultimately, there is obviously something wrong with your health and you need help as soon as possible. One last option, does your national MS Society have a helpline? They may be able to throw further light on what your options are?
xx
I would be able to choose my own Healthcare system when I turn eighteen, but I literally just turned seventeen a few days ago. All the paperwork for the new neuro would be supplied by the old one. I’ll see about whether our MS Society has one, though my mom won’t let me contact them until I’m eighteen anyway. I’m glad someone who knows what they’re talking about is able to help me. Sorry about replying so late. I’m terrible with getting back to people in a timely manner. Also, it’s been kind of hard to get back to you with the whole five hour difference in time thing, and when I’m at school I don’t normally have time to reply to people, and when I get home I seem to forget.
Hi there,
You can certainly call the MS Society helpline at any age, you don’t need to go through your mom. My son thought about calling them when he was 12 and I was first diagnosed but in the end he confided in a friend who also had a mother who was ill. So please don’t let that hold you back. Maybe you could give them a call when you’re at school, on lunch break?
As all your options seem to be on hold until you’re 18, I really think starting with the Helpline is the best choice. They probably know a lot of stuff I haven’t even thought about and can chat through various things with you.
Let me know how you get on? And a belated happy birthday to you 🙂
Bxx
Thanks for the help, and for the happy birthday. I’ll see about calling the MS Society.
With some MAJOR work I FINALLY got my mom to take me to the neuro!!! MS has been ruled out, but the neuro thinks I’ve got Periodic Paralysis. Apparently I fit a near perfect description of Hypokalemic Periodic Paralysis. The doctor managed to convince my mom that I need genetic testing to determine if I have it. I’m going to get a blood sample taken and the doctors are going to look at my genes and compare them to a list of the discovered genetic mutations that can cause Periodic Paralysis. Since not all the mutations have been discovered a negative genetic test doesn’t necessarily mean I don’t have it, in that case, from what I’ve heard I’ll probably get diagnosed anyway because my symptoms perfectly match. Additionally paralytic attacks cause damage to the muscles and eventually I’ll have muscle weakness, that’s the reason why stopping a paralytic attack in its tracks is important. Luckily, I’ve heard eating a candy bar, or something high in sugar can stop a paralytic attack for some that have this disease, so now I can look forward to eating candy bars multiple times a day! No more candy limits!!! Or, at least I hope if I have to fit into a disease catigory it’s that one. Though since it’s an inherritated and occasionally sporadic disease my family will need testing if I get diagnosed. It’s likely my mom is a carrier, and she got the disease she’s carrying from her estranged father who she’s only met on a couple of very brief occasions before he died sixteen years ago, so it would make sense if no one had any idea he had it. Either that or mom has it, and has had no symptoms, not everyone with this disease shows symptoms in their life, or has only had a couple of attacks, so she wrote them off. The spasms would be just spasms then, and same with the vision problems. Less than 200,000 TOTAL in the U.S. have this disease, so it’s not suprising no one could figure out what’s wrong.
Hi there!
So great to hear back from you! I’m so glad your mum took you to the neuro and you must be totally relieved to have some answers at long last.
Good luck with the blood tests and stock up on the candy bars!!
Wishing you lots and lots of happiness 🙂
XX
There is a very good support group on Facebook for Hypo KPP. Susan (the moderator) has written some very helpful books that might make it easier to deal with doctors.
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/?fref=nf
x
Hey Emma,
Hope you see this link above, from Donna.
X
I just turned 30 on the 11th of June. I have been having symptoms of possibly MS for about a year and a half. The back of my eyes hurt, I have areas of my arms and legs that will go numb for 3-8 hours at a time and I have to walk with a limp because my hip pains me always. I went to the dr and they found a knot, lump around my shoulder area below my neck, that they said was a muscle knotted up. All they wanted to fo was have me go to therapy 3 times a week for 6 weeks. Needless to say, that was a washout. And they told me I had to do the therapy before they could an mri per insurance. What approach do I need to take next?
Hi Ashley,
I’m really sorry to hear all you have been going through recently.
I don’t know a huge amount about American healthcare. Is there any way you can have a second opinion in order to push for an MRI? Or can you pay for an MRI independently and skip the therapy?
The problem with MS is that the symptoms can often make up so many other illnesses, so it’s incredibly difficult to diagnose. Can your general doctor help? Maybe run some neuro tests?
Sorry not to be of more help – let me know how things go?
Bx
I have TMS. I got it in 2013 and I was 14 years old. My tumor was in the middle of my brain stem. So far KNOCK ON WOOD?? I haven’t had any other tumors. It would really really be nice if I can meet an other person with the same MS as me with the same tumor spot too.
I live in Davis CA.
Hi Kellie,
I’m really sorry to hear this. I wonder if you could contact your local MS Society and see what kind of social events they run, so you could meet other people?
X
I’m 48 & just started seeing a neuro. I currently have hypothyroidism & plaque psoriasis that I take Humiara for.
About 3.5 years I started having foot pain that felt like walking on broken glass. They made me orthotics, but they don’t help. My right big toe is always numb & I can’t bend it.
When I move my neck up & down, I feel tingiling in my big toes.
After a break up 2 years ago my life fell apart. I stoped playing basketball & rearly golfed, but when I did I would only have right knee & some low back pain.
After I stoped I started feeling great, very little pain anywhere except some in the feet when I would stand for a period of time.
Then last year my low back started killing me. I’ve went to a chiropractor & pain specialist. After two injections in L2 & L4 the pain was the same. MRI showed some arthritis & vertebrae movement but nothing serious. They suggested surgery but I said no way. My back feels a bit better but my entire body feels as if I have severe flu, Cronic fatigue, pain in my neck shoulders, both hips, knees & feet. I’m 6’6”
I hate my life so much. I try to stay active & workout, but I just want to lay in bed & sleep.
All my bloodwork is fine. I just had an MRI on my neck & they did some electro stuff on my hands & poked my muscles with probe things. He said he was expecting different results but didn’t say what kind. They put me on Gabapentin @ night , not sure it’s working.
I see him again Thursday & hope to get some answers. I have no social life & no true friends to talk to.
Thanks for listening.
HI there, I’m so sorry to hear you’re in so much pain and feeling alone.
I really hope you get some answers very soon. Let me know how it goes?
Sending hugs X
For the last 5-6 years I have been experiencing pain. Extreme tiredness. It’s hard for me to sleep at night. I have joint pain and everything seems to fall asleep at night. Sometimes just my arm(s), hands and sometimes an entire side of my body including the leg. I get hot so easily and at night I get hot but it doesn’t feel like pre-menopause hot (that feeling of being on fire from the inside). My arm will go numb (right) just for no reason. I lose my balance a lot and drop things I know I had a firm grip on. Going up and down stairs I have to hold on and count so I don’t trip down the stairs. My memory is so bad that I cannot even remember things I have said to the point I think I am crazy. I have trouble swallowing sometimes and other things. I asked my doctor about the numbing feeling and she had no answer. I was dx with fibromyalgia and I still feel it’s not what I have. They did xrays for arthritis and it’s not that. I am afraid to ask my doctor because I already seem to complain about everything. I have a brain MRI in March for this ear disorder I have (SSCD) and I wonder if that will possibly show anything. I know reading the internet and you think you have everything but deep down I know something is causing all my pain and discomfort that isn’t fibro.
Hi Lisa,
I’m so sorry to hear everything that you are going through, it sounds truly frightening and all you want are answers. Please, please don’t be afraid to ask your doctor about it – it’s what they’re there for. I know what you mean, but please, your health is the most important thing.
I wonder if the MRI shows lesions when it’s being taken for something else – perhaps worth asking your doctor about this?
Stay strong, there’s a huge online community for support and I really want to hear how you get on. Please stay in touch!
Bx
Often I think yhe books touting about how they cured their own disease be it MS, Cancer, Fibromyalgia, etc.. are really people who were mis-diagnosed, anf managed to correct what was really out of balance by their regimine, or whatever.
Our bodies are so interdependent that like a car with a flat tire, EVERYTHING gets thrown out of whack!
A great example is the whole Hashimoto’s/Fibromyalgia mess. People diagnosed with Fibromyalgia, that later are diagnosed with Hashimoto’s (thyroid autoimmune disorder), once treatment and control of the Hashimoto’s was found, suddenly the Fibromyalgia disappeared! So another tricky set of diagnosis with overlapping/similar symptoms that causes miss diagnosis. Especially when not all Hashimoto’s sufferers will test positive for the blood test. I am an unfortunate case of both Fibromyalgia and Hashimoto’s, that doesnt test positive for the blood test. But I also dont have the blood markers for RA, like my mother. But have been diagnosed as she has. Of the 5 women (my mom and her 4 sisters) 4 of the 5 girls have RA and Hashimoto’s. Only 2 will test positive for them in their blood work, but because of the obvious thyroid levels, and physical markers and symptoms they were diagnosed. Responded well to treatment.
Its is frustrating for both medical personnel and the patients. To want to have solid answers, to make a game plan, a way to manage and in some aspects fight back, and hold ground against debilitating things like MS, and all the others that dont fight fair!
Its the quizzes, books by the truckload, and so many other people trying to cash in on the hope we have.
Hi there, you make a really good point and I completely agree with you! X
I have and ms like symptoms for years which my father before he passed in 2012 chased up and tried to help me get to the bottom of it, ended up going to the doctors with him before he passed away and the doctors said that it’s a migraine attack now me being 12 at the time didn’t know any better and agreed but when I had another attack a few years later I went back to the doctor and was told it was anxiety attacks and depression and all to do with how my body was coping to my fathers death, then I got onto smoking and drinking alcohol with peer pressure at the start and found the full sense of security that these helped me, I had been having continued attacks until 2019 when I had a major attack and some things tended to stay around, I didn’t go to the doctors about this as the thought it was to do with anxiety as I had been told in the past, but about a 3 months I noticed significant change when I had another attack which gave me noticeable cognitive decline and I completely cut out alcohol and then finally decided to try to chase up again and get to the bottom of what was going on, went back to the doctor he did a check up and referred me for a ct scan I went to have it and he said things seemed fine and it was probably just anxiety related, finally saw a neurologist also last week for the first time ever and he said I did very well in my physical examination, I suppose I’m in a very difficult place right at 22 years old and have quit smoking as of 5 days ago, also with the cognitive decline it is associated with troubles with memory, thinking and confusion – I seem to get not exactly attacks like I use to but now confusion attacks that seem smaller and less serious but it honestly scares me when the doctor says that it’s nothing serious and I know it is with memory, thought problems, balance problems, pain in legs and confusion related to cognitive decline, (sorry for going on a bit of a rant their)
Anyway I am finally set for a mri tomorrow from the neurologist but am very worried that it might be too late as after every attack things seem to decline now and I am the primary carer for my mum and brother and partner which also worries me for them. Hopefully I can get to the bottom of this and haven’t left it too late or been to stupid when younger to realise what was happening to me
Hi there, I’m so sorry to hear everything you’ve been through and I really hope you get some answers after the MRI. It sounds like you’ve experienced a lot for such a young person. It’s a really confusing time – I remember it like it was just yesterday – and in the end, my diagnosis was kind of a relief in a strange way. Let us know how you get on? X
Hello stumblinginflats. That brought a smile to my face btw. I am waiting for an MRI for MS. Because the GP is the non communicative type, I have a question. Now I have been referred for an MRI will there be other tests at that appointment to rule MS in or out plus a discussion with the neurologist or have I inadvertently begun a rambling course of back and forth between GP and hospital?
Hi Anna, really sorry to hear about this, but glad you’re going to have an MRI. Unfortunately, the whole MS diagnostic process can drag. There’s something called the McDonald Criteria (worth a google on reputable sites!), and you have to meet them all to have a full diagnosis. If there are lesions showing in your MRI, you should be referred to a neurologist for further investigation and tests. This will include a neurology examination, usually and perhaps a referral for a lumbar puncture, but not in all cases. In the meantime, if you aren’t already, start keeping a notebook with dates and symptoms you are experiencing as this will really help you in any further appointments.
In my case, I had an MRI after a huge attack (out of the blue) and was immediately sent for a lumbar puncture the same day, which showed up positive for MS. But, I still had to wait more months to fulfill the McDonald Criteria. Sorry if this all sounds so confusing! Let me know how you get on? Also, the MS Society has some wonderful forums online, especially one for people who are waiting for a diagnosis/newly-diagnosed. They were a lifeline for me!! X
Thanks alot for that. No not confusing, very helpful infact. Now I know the order of things. Yes I have been keeping a record and will continue now that I know it is actually relevant. May I ask what your attack was like that prompted the MRI, it’s no problem if you don’t wish to say.
GP said 6 week wait to MRI, NHS website states 18 weeks. Any idea roughly what others are saying about wait times?
Yes the MS Society is useful but didn’t know about the forums. Thanks again for such a quick reply.
Of course! It came out of nowhere one weekend – I was on a day trip with a friend and found I couldn’t speak properly, mixing up my words and struggling to make sense. Then I couldn’t walk properly and was absolutely exhausted. This worsened over 24 hours and I went to my chiropractor who ran some neurological tests on me and sent me straight to hospital. I had to leave the hospital to get back for my son so an MRI was scheduled for a later date.
Re. MRI waiting times, it really depends, but with the pandemic, I know there’s a huge backlog now, so it’s hard to say? One option perhaps is to find out how much it would cost to have a private neurological consultation and MRI then go back to the NHS. A lot of neurologists work in both so if you find one who does, it’s good to book in with them. I wish with hindsight that I’d done that, as it may have cut out some of the awful waiting times! X
I’ve been geting eye,leg,arms,feet twiches some lasts a few weeks others like the one in my eye lasted every day for a month witch in and of its self almost killed me or at least made me want to use a fork to dig out the eye now got one on my nose going on week 3 my hands & feet get these realy bad Charlie horses cramps so painful keeps me from moving tell it past I’m also forgetting things and have truble paying attention to my surawndings im more depressed and sad then I’ve ever been I’ve never had good balance tho and I get severely lightheaded when standing one time passed out like 3 times in a row they seid my blood pressure droped to below below average everytime at least for over the past 4 years every time I got to take a 2 my tummy cramps in pain every thing moves slow the crap and pee they both come out slowly think that’s what causes the tummy pain I constantly get up to go pee at night I’m constantly irritable and sad sometimes I fumble my words and easily forget things that just happend what does and only happend a few times but I’ll be just siting normally and my left or right arm or foot or legs fall asleep but the tingling is ten times worse then if I fall asleep on my arm I also never thought about it tell I read about ms is that lately I find I’m saying what a lot like it sounds like pep are just mumbling when they are not dos this sound like ms or am I being overly sensitive to what I read
Hi there, I’m so sorry to hear you’ve been through all these things. I really do think you need to get yourself to a doctor and chat everything through with them? Perhaps write a list of all the symptoms you’ve been experiencing so you have it all to hand? I hope it goes ok! X
Approx 15 years ago I had this extreme pain and heavy pressure just below my chest. I could not breath and doubled over in pain, tears just flowing from my eyes. My now ex husband rushed me to the ER. They did not do any tests and just gave me a “g.i. cocktail” and sent me on my way. Fast forward several years and it happens again. My PCP and G.I. doctor are baffled. Upper G.I. done with nothing to show it was from a G.I. standpoint. Fast forward a few more years and it happens again. I do not even bother telling anyone because, well, what are they going to do. It is now 2016 and I end up being diagnosed with Trigeminal Neuralgia. Neurologist explains there is no telling what causes it, but it could be a symptom of MS, although she highly doubts it. I am started on Carbamazapine (sp) which helped with the electrical shocks but not the constant numbness on right side of face. I stopped taking it 2 years ago due to the cost of the meds. Last year the pain below chest happens yet once again. Still don’t say anything to the doctors about that. Now a new symptom comes on a few weeks after that. I can no longer walk without extreme pain/cramping in the arch of my feet. My doctor says “it may be because you are overweight”. Sigh. No injuries to relate to it. And now another new symptom. Almost 2 months ago, I started having pelvic pain on the right side and along with it came the lower back pain on the right side as well. Not just pain though. Extreme spasms/cramps. I went to PCP & GYN who both cannot figure out what is going on. When I mentioned the possibility of MS, my PCP kind of chuckled and blew it off. Because of Insurance and COVID, it is next to impossible to find a new PCP right now. I do not know if anyone here could give me insight if any of this actually sounds like it very well could be MS. I know self diagnosing is silly and the world of the internet will always give you dreadful results. I figure I would go straight to the sources and see if anyone here has personal experience or knowledge with such.
The pain that I am in has taken such a toll on my life and relationship, that my life long anxiety & depression has worsened these last couple of months, even with my day to day meds.
Thank you for having a space for us to come to!
Take care.
Hello there!
I can really feel your frustration with everything you have gone through. Not knowing exactly what is ‘wrong’/not working properly is awful.
One of the biggest problems with MS is that so many of the symptoms could be due to other illnesses.
It would be remiss of me to give you medical advice, only explain what happened to me before my diagnosis. I was fortunate enough to work with a chiropractor for ten years and he knew my family history of MS. Over the years, I had asked him various things when niggles happened (which I can now attribute, mostly, to MS). He ran through the standard neurological tests in his clinic and reassured me.
However, after my first major relapse, he was the person I turned to. He did the same tests again but this time sent me straight to hospital. I’m not advocating chiropractic, but perhaps a different health care professional might be worth seeing? I know your medical system is completely different to ours here in the UK though.
Please know you’re not alone – there are so many people going through similar things. I’m always around, so please let me know how you’re doing?
Bxx
Thank you for the reply! I had debated on finding a chiropractor and right now it is next to impossible finding one with an immediate opening for a new patient 🙁
I was able to do a last minute video visit with my PCP a few hours ago. The pain is not letting me sleep today. I cannot take NSAIDS because of a history of ulcers as he had initially suggested. I brought up getting back on carbamazepine. Instead, he gave me a script for gabapentin and flexeril. just took my first dose of gaba. Crossing fingers for relief!! He also gave me a referral for physical therapy to help with the back pain and spasms/cramps.
Hello there,
I’m glad you were able to see your PCP, even if only on screen! The physical therapy referral sounds good, and I hope the meds give you some form of relief. I know you still want to find out the underlying cause and I’ve got my fingers crossed for you! Xx
I see you had a good chiropractor so I am wondering what things he or she identified. I ask this as I began seeing a chiropractor for pain etc after osteopathy failed. I was waiting for an MRI last time I wrote and asked you what your first attack was like. Thank you for that btw. I see the chiropractor 1- 2 times per week at the moment. Not getting far yet, 2 months in. At initial assessment he identified a numb left side which I told him had been a long time for me from face to foot. I’d been dropping things when holding them in left hand and knocking things over when trying to pick them up or putting a cup down thinking I’d let go of it only to see it flying, and so on. But chronic pain on the right side. I am having a lot of problems making it to the bathroom in time to do a wee, as I have no forewarning and end up running and frequently wetting self.
Anyway I’m not asking for a diagnosis, more: does any of this sound familiar to you in your own case, or other sufferers that you are aware of? And may I ask what issues the chiropractor identified with you that were in hindsight MS?
Hi Anna,
Lovely to hear from you again! Certainly, the symptoms you describe sound like MS, but could be so many other things too. Have you spoken to the chiro directly about MS?
On the day of my major relapse, he ran through the standard neurological tests, finger to nose, following his finger with my eyes, how I walked, resistance (i.e. pushing against his hands) and clenching fists. I was pretty weak in all of them I think, although the day is a bit of a blur!
The hindsight symptoms were things like weakness in parts of the body, but at the time they weren’t presenting strongly enough to be particularly worried about, particularly as I already had a lot of physical symptoms and lingering pains from a car crash years ago, so the picture wasn’t clear. Xx
To Americans: we do not need to request an urgent MRI and there is virtually no wait time to see a neurologist so go get tested if you feel you do although an MRI is not a guarantee. American healthcare is the best except for the uninsured. However if you make certain incomes or less you can get Medicaid free. Virtually either every county or hospital system offers treatment at a very discounted rate regardless of how much you make.
I have a question : I have a bad back and have symptoms such as blurred vision, tingling, sometimes hurting eyes and just many other symptoms which I feel can be interchangeable with general chronic pain and anxiety and depression. I take a pretty decent dose of opioids and benzos and still struggle. Would lesions in my spine have been easily noticed by the radiologist / pain management doc when I’m getting a general lower back MRI?
Hi there, and thank you for the information for American readers!
I honestly couldn’t give you medical advice as I’m not a Doctor. I’m really sorry to hear you’re experiencing these symptoms. It might be an idea to have a chat with your care provider and see whether the medication you are on is causing your symptoms or whether they need further exploration?
I really hope you can find some answers! X
I have every symptom that’s listed. But my neurologist has to to do a spinal tap for verification.
I hope it goes well for you x
I got diagnosed last yr and was just looking on the web and found “do i have MS online quiz” and stumbled upon here. I took the quiz mentioned and it said it wasn’t sure XD I’m 20 yrs old and was just curious and wanted to learn more about MS.
I suffered from crazy anxiety in 2018 and one day I woke up with my right side completely numb (would this be considered a relapse? I’m not too sure when this word would apply), I thought I was having a stroke LOL I was so scared. I felt weakness in my right hand and couldn’t write properly.
Hello there, I’m sorry to hear about your diagnosis and hope you have a good medical team behind you. It can be really difficult to work out what’s a relapse and what’s a flare-up. I always heard that if it’s a new symptom, it’s a relapse, but old symptoms coming back are a flare-up. Ten years since my own diagnosis, I’m still undecided a lot of the time! X
Last year I had Asbestosis,Lymphoma,COPD and Emphysema this year I have got Prostate Cancer,MSN and Stomach Cancerror that is according to various websites.Keep off Google
Good advice! 🙂
I tried to take the quiz and the link given didn’t work. I’d still like to take it if possible.
I’m really sorry about that – I wrote the post a long time ago!
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Thank you X