Just diagnosed with minor MS

New diagnosis and before diagnosis
1

Hi,

I was officially diagnosed yesterday with minor MS and regardless of several tests was a little shocked! 1 month prior to my 40th birthday (3 years ago) I began feeling tired and a little run down. October 2011 I had several days where I was walking around constantly in sunglasses, even in work at my computer, as my eyes were really sensitive to the light. In the December I then had approximately 4 weeks of double vision. This resulted in visits to the Eye Casualty and then to a Neurologist. My MRI scan identified several lesions. At the same time my doctors advised me that I was borderline diabetic. I was then advised that all my symptons were down to diabetes and was subsequently discharged. Last June I then had a very sore/painful eye particularly looking in specific direction and was referred back to the Neurology Department. I saw another consultant who sent for another MRI scan with and without contrast (dye). This came back with another couple of lesions that had appeared since my last scan. He then sent me for several blood tests, spinal MRI and Lumbar puncture, of which I received all results yesterday. My spine is clear of lesions however the spinal fluid confirms that I have minor MS. My consultant wants to see me again in 9 months and will carry out another MRI to check if there are any other additions and if so, I believe will start me on treatment. If not, he will not need to see me again - until I think that I have another ‘attack’.

What I find worrying is that I don’t know if and when I am creating another lesion - if there is even a way of telling. I am not one for sympathy and will face life’s trials and tribulations head on but was really annoyed at some responses from my family by saying stuff like that’s good then if it’s only minor and like it is an every day occurence. In addition, I have been told off for being ‘negative’ when explaining what some of the symptons of MS can be.

I do worry about how long I have before this has a major impact of my everyday life. At the moment, it is bearable and not causing me any major problems, just get tired and worry whenever I get an headache etc. I am trying to carry on as normal as possible.

2

Hi I’m not very medical but I don’t think you can tell when you are creating another lesion so don’t worry about the headaches. Hopefully it won’t cause a major impact on your life. I have been told sometimes they only discover someone has ms in postmortem. However even minor ms can have inconvenient symptoms. In my opinion if you are offered treatment grab it with both hands - only my opinion mind you. I am on rebif which slows disease progression and reduces relapses. So ok it’s a pain to inject three times a week but if it does what it says I would be silly to refuse. Take care and try not to worry I know easier said than done Min xx

3

Hi,

Many thanks for your response. I am thankful that even though I have been diagnosed with MS that I do not need any treatment for it yet and long may this last. I do like being in control of my life and the direction it takes and if I am honest, this is what I find most difficult at the moment. It all still seems a little unreal! I think I also feel a little fraudulent as well with the problems that others have with MS and I shouldn’t dwell on my diagnosis as I am so much luckier than so many others.

Thank you again. Not feeling so alone and neurotic with being able to correspond with someone that understands.

Karen x

4

Hiya…sorry to hear of your recent dx…and can empathise re your eye probs…although at present I am not sure or indications are they are not MS related…even so I have light sensitivity too…which is painful and very disruptive daily…also had what they think is ON(there are 4 diff types, only two connected with MS) although Uvetis can be caused by MS or virus/toxic/auto immune prob…

Its good the neuros are keeping you o thier books…as they should MS is MS whatever the severity…have they given you an MS nurse yet? if so keep in touch with them and pick their brains as opften as you need to…I certainly would not let them discharge you after next MRi/appt…as you are aware Ms can affect everyone differenly and it may be that things stay as they are with you…just take one day at a time and obviously keep an eye on your eyes …excuse the pun…lol Did they give you any treatment for your light sensitivity? I have not had any despite having had it sinec mid Feb!! Others on here also keep a diary of any new symptoms…and they discuss with gp or MS nurse…

Em x

5

Hi Karen, and welcome

Sorry that you’ve had the bad news. Also sorry that your family isn’t being terribly supportive (although they probably think they are)! When we get told the words “multiple sclerosis”, it’s only natural to want to know more about it and to discuss the various possibilities with friends and family. Them not wanting to listen doesn’t really help with that. Hopefully they’re right, and nothing bad will happen to you (it is possible), but you might want to try and get through to someone so you have a “real” person to talk to (and them to you). Of course, you can always offload on here!

Something that I always think twice about saying, but say anyway(!) - there is actually no such thing as “minor MS” or “mild MS”. Neuros who use these terms think they’re being helpful, but they’re not! Why? Because types of MS do not have any description of severity in them. The only exception is Benign MS and that can only be diagnosed after 10-15 years, if a patient has not developed disability / continues to recover well from relapses! There is even some debate about whether or not the term “Benign MS” is even meaningful. So telling a patient that they have “minor MS” is simply confusing: there’s no such thing. It is potentially misleading too: what should you tell employers or the DVLA, for example?

What you actually have is RRMS (relapsing remitting MS) - you have attacks which you then recover from (at least to some degree). At the moment, your RRMS is mild. The fact that you are a woman and that your initial symptoms are sensory is good news - this suggests that your MS is likely to stay relatively mild.

Sorry if that sounded a bit like a lecture. These well-meaning(!) neuros really get my goat!!!

As far as detecting new lesions goes… There are effectively two types of lesions: “clinically silent” lesions (they are “silent” because they don’t cause observable symptoms) and lesions that cause symptoms. So, the only lesions that you will know about are the ones that cause symptoms: if you get new neurological symptom(s), then you have new lesion(s). There are no pain sensors in the brain so lesions don’t hurt.

There is not a great deal you can actually do to cause lesions although smoking is bad news for MS. It’s sensible though to eat healthily, keep fit, make sure that you keep your vitamin D3 levels high (most of us take a hefty supplement), keep flexible and avoid stress, as all of these things can help your body to fight off MS.

The diagnosis is scary. The unpredictability is scary. But, somehow or other we muddle through to accepting and dealing with it, life goes on relatively normally and it can still be long, happy and productive. In fact, MS is not the end of the world: life can still be good!

Karen x

6

Thanks to you both for giving me advice. I have looked up Minor MS but was slightly confused as it wasn’t one of the 4 types identified. I wasn’t given anything for light sensitivity or any of the eye problems I encountered at the time however they did start me on treatment for diabetes (1500 mg of Metformin) and Simsvastatin. Luckily I haven’t suffered another episode as of yet although I do find myself squinting sometimes and more comfortable in sunglasses!

I have not had an MS Nurse even mentioned to me or knew that I would have access to one, particularly with the MS not giving me major problems at the moment. I am contacting my own doctor when they reopen after Easter so maybe it will be a route that they will take. I will definately query it.

Thanks for the tip re Vitamin D3 as well as this is something else I wasn’t aware of. I will definately be picking some up this weekend.

I do tend to follow a healthy diet and exercise regime and gave up smoking some 4-5 years ago. I have also almost given up alcohol! Whenever I got tired and had had a drink, I would often end up with double vision although it disappeared when I had a good nights rest, although I was never a big drinker! I also had one episode where I couldn’t remember a thing! Luckily I had been at a friends house and had arranged for my son to pick me up and take me home! Although she did large measures of bacardi and coke was diet and only had 4 drinks (which probably were more in the region of 8). I was mortified the next day not being able to remember anything. Only had 3 drinks in total since during 2 occasions.

I cannot thank you enough for the tips and advice. It is such a tremendous help to me x

7

Hi Kizi x

Chase up all the support you can get! It sounds lik eyou are doing all the right things already!

Alcohol intolerance when you are not well is dodgy!!! x My first experience was several years ago when I first started to get symptoms. I was not a big drinker anyway & only drank lager & wine usually - anyway I went on my sister’s hen night and bacardi was the culprit there too! I hadn’t slept properly or eaten much for 2 days and stupidly hit the bottle with a vengeance!

I remember having a whale of time with the ‘girlies’ … next thing I knew I was mortified to wake up and find myself on a hospital trolley!!!

Apparently I had gone home, passed out & my son couldn’t wake me up!! - he called an ambulance!!! - paramedics also couldn’t get any response so they took me in - wth blue lights flashing - the lot!!!

The doctor in A&E told me my blood alcohol level was off the scale!! My poor mother, a very drunk, still singing sister & brother in law had to take me home in a blue hospital gown as I was carted off only wearing my bra & knicks!!!

I have NEVER EVER been so ashamed !!!

xxxjenxxxx

8

The best place to buy vitamin D3 is usually the internet. The most common dose that people take is 5,000iu a day. This sounds massive, but it is recommended by leading neurologists and is only a fraction of what our bodies naturally produce in 20 minutes of bright sunshine. If you want to know more, then have a look at the vitamind3uk and vitamindcouncil websites.

I’ve been using Healthy Origins 5,000iu for 18 months now. You can get it from amazon for a decent price (about £12 for almost a year’s worth), although it’s worth checking ebay to see if it’s a bit cheaper.

You should definitely try and get details for an MS nurse. If something new does happen, they can be really helpful.

Just a thought, but is your neuro an MS specialist? If he isn’t, then it might be worthwhile switching to one who is, if and when something else happens rather than going back to see him. (All you need to do is get your GP to refer you.)

Alcohol is actually OK for MS, but it’s a muscle relaxant and double vision is often caused by eye muscles not working together properly - add the two, and double vision is probably going to get worse. Not very pleasant I can imagine! (It’s not something I’ve had.)

Btw, there are some really wacky internet sites about MS. Best to stick to this one and the MS Trust for now. You can download booklets from both sites (or order free hard copies) too. One very important thing to remember while you’re reading: MS is massively variable. That means that booklets have to cover loads of symptoms that you will most likely never get! And even the ones you do get may turn out to be very mild. So try not to scare yourself!

Karen x

9

Hi Karen,

I was just reading your post and you sound just like me, I had double vision for 4 weeks last August and they sent me for an MRI which showed white spots on the brain, which they suspected MS. I haven’t had any more symptoms really, except that just the last couple of weeks, when I lay on the sofa and get up it feels like my legs are going to give way for a few seconds. They haven’t yet thank goodness! And it’s also happens when I first get up sometimes.

I just went up to Kings last Thursday for another MRI and a lumbar puncture so I’ve got to wait for the results. But I think I have got MS due to the dizzeness etc that i’ve recently had. Oh and i had a headache for a week afterwards, I could only get up today!

I’m trying to put it to the back of my mind really, because I don’t want to stop doing Zumba which I love! So i’m just going to carry on until I physically can’t anymore. I’m hoping if I keep fit, I can battle it if I do have it. But I also take the attitude, what will be will be.

Oh and I don’t know if it’s related but when I drink, I do get much more drunk than my freinds that drink the same amount and there was one occasion where we went in to town and I just collapsed and two guys carried me up to a bench where I came round, then I was fine, just embarrased!!! But my freinds even said I hadn’t drunk that much and I didn’t feel it when I came round either. HONEST! So now I’m wondering if that was something to do with it as well after reading some posts on here.

Claire x

10

Hi Kizy.

I have recently had some MS-like symptoms and am waiting for a referral to a neuro. I am supposed to be having an MRI and lumbar puncture. I woke up 3 weeks ago completely numb down my left side with double vision in my right eye and extreme weakness on left side of body. I was scared and went to my GP who sent me straight to hospital for a CT scan. Scan was clear as were my bloods so now awaiting neuro appointment.

I have been reading lots about MS and think it is quite likely I do have it but am not going to start diagnosing myself just yet. Am just going to wait and see. My smptonms got so bad that my left leg gave way completely and I couldn’t walk. I didn’t know what to do. I called my GP who just said there’s nothing anyone can do right now and I just have to wait for the heuro appt. I don’t have family nearby so I was left alone with two kids. Kids have been really good and have helped as much as 12 and 14 year old boys can. Bless them.

I am hoping that the worst part is over and I am on the road to revcovery now as my left leg feels stronger and am able to walk without my walking stick now and I have feeling in my face again but left side of body still numb. I am still experiencing the ‘MS hug’ which is horrible. Not painful but umcomfortable and a bit scary when it feels like I am being squeezed so tight it makes breathing harder. Night time seems to be worse.

Rizzo - May I ask you more about vitaminD3? I am still learning about MS and all the info can be quite daunting.

Also, “The fact that you are a woman and that your initial symptoms are sensory is good news - this suggests that your MS is likely to stay relatively mild.”

I would love to know more about this. My symptoms are: numbness/pins ‘n’ needles in my left side of body, head to toe plus weakness in left side (hand/arm and leg/foot) and double vision in my right eye. I have to wear a patch so I can at least see in single-vision and don’t feel sick and dizzy all the time.

11

Claralara - I know how you feel about zumba! I have not been able to do my jazzercise and zumba classes for 3 weeks now and I am missing it terribly, not just the routines but the girls there too. There’s no way I can do anything like that at the moment but I really hope to get well and strong enough again so I can go back.

12

Hi, well done you for trying to be on top of your MS.

But minor MS is still MS with all it`s possible implications.

So, yes, your family are being insensitive to your feelings.

i really doubt that any of us can know when/if more lesions are developing. That is something which can only be seen on MRI scans.

You have had a lot of eye problems, which would scare me silly, if they happened to me.

luv Pollx

13

Hi Midnightmoon

I feel your pain, I know what you mean about all the lovely freinds you meet, I miss them so much am going to go back as soon as I feel fit enough! I have the attitude that it’s building my strength for one or if I do have a bad time. It also makes me so happy which you need when you have something as unpredictable as this hanging over you i think, so all good

Claire x (aka Claralara, i couldn’t have Claire lol! )

14

There has been a lot of research into vitamin D3 in recent years. The idea initially came from the fact that people who grew up in countries with less sunshine were more at risk of MS. Lots of research later into environmental factors and genetics has pretty much conclusively confirmed that D3 is an important factor in the initial development of MS (basically people with low exposure to D3 in the womb and/or growing up are more likely to get MS) and there is growing evidence that it is implicated in the severity of MS and frequency of relapses too. As a result, more and more neurologists and MS nurses are recommending that their patients take a supplement. The amount advised varies mind you, but it is a heck of a lot more than the paltry 400iu recommended by the current NHS guidelines: the amount most commonly recommended seems to be 5,000iu a day. This seems a lot, but is a fraction of what your body naturally produces in only 20-30 minutes in bright sunlight. Have a look at the vitamind3uk and vitamindcouncil websites for more info.

It is possible to buy D3 supplements very reasonably on-line, e.g. I get Healthy Origins 5,000iu (360 capsules) for about £12 on amazon. Is it working? Absolutely no idea! But it certainly isn’t doing me any harm!

The thing about being a woman and having sensory problems being a good sign is the sort of information that comes from large group studies and compiled information over many years. Basically, men tend to have more severe MS than women and people who initially have sensory symptoms tend to become less disabled than people with motor symptoms (e.g. mobility problems). The key word here is “tend”. It’s a bit like “men tend to be taller than women” - it doesn’t mean that all men are taller than all women, just that that’s generally true. Actually, that’s probably too definite an example; MS has far more exceptions to the rule. So, it’s broadly true, but absolutely not a guarantee. For example: a friend of mine’s first major relapse left her in hospital completely unable to walk for months. She literally had to learn how to walk again. My first major relapse was completely sensory. Who had the better prognosis? Clearly me. But years later, I’m the one using the stick and the chair and she’s the one who can walk for miles. So, there are things that can suggest someone’s prognosis, but it really is impossible to tell for sure: MS is just too unpredictable. One thing that is absolutely certain though: there is no point in worrying about it. The simple fact is that what you worry about may never happen! And that would be a terrible waste of emotional and cognitive resources that could have been spent doing much more productive stuff, like living your life to the full. I was diagnosed 14 years ago this year. My two greatest fears at the time still haven’t happened. I will be forever grateful for the counsellor I saw in the beginning who helped me to face those fears and let them go, otherwise I might have had 14 years of pointless worry that interfered with me doing all that I have in that time.

Sorry, lol, probably more than you wanted to know!

Karen x

15

No, certainly not more than I wanted to know at all. Thank you for taking the time to reply. I appreciate it.

I am currently going through my first ever ‘MS-like’ symtpoms and as yet do not know what is causing it so I am very interested in anything MS. Of course, it could be something that presents very similar to MS. I am awaiting a neuro appointment which seems to be taking forever but then everything seems to take forever when you want answers now.

Really interesting about lack of sunshine and vitamin D3 etc. I used to work night shifts in my younger years, probably has nothing to do with it but you never know. Anything that may help and can do no harm is worth trying right? Presuming too much vitamniD3 can’t do any harm?

At the moment my symptoms are both sensory and motor. I started out with numbness down left side, then weakness followed, then right eye sight went squiffy with double vision, then left leg went completely and I could not walk for about 12 hours, now leg is growing stronger, still have the weakness, numbness and double vision but can now walk around the house and even up the stiars without my stick and have some feeling returning n my face again. I hope this is me coming out of the ‘episode’ of whatever it is - but don’t want to count my chickens too soon.

So sorry to hijack someone else’s thread. Somtimes it’s agood thing though as you learn from someone else’s experiences.

Thanks again for your help. You are a fountain of knowledge :slight_smile:

Happy Easter all

Jo

x

16

From memory (which is far from reliable these days!!!), I think tests have shown that you need something like 400,000iu in your system to be poisonous? If you are remotely concerned, then you can get a blood test via your GP. It’s a good thing to get anyway actually - so you know where you’re starting from, and if what you are taking is enough. I started on 1,200iu a day (5,000iu seemed to be waaaaay too much especially as it was before neuros were recommending it) and had a blood test after 4 weeks or so - my levels were low “normal” - on 3 times the RDA! Definitely made me happy to take 5,000iu a day! (I’ve put “normal” in inverted commas because the current levels in the UK are very out of date. To help MS, like some other conditions, we need much higher levels than that.)
Kx

17

I have a SAD lamp. Is this the same thing?

18

The news information on this site is cut and pasted from articles published around the world. As such, it is as reliable as the original source. Personally, I find their news feed very helpful and informative.

However, cutting and pasting a single study is very misleading. People who do not know how to read scientific papers or are not familiar with methodology or the terms used may not understand what papers are actually saying or know how much to believe them. For example, this is a very small study (small is bad). It does not tell us what medication the participants were taking (e.g. there may have been more people in one group on DMDs than on the other group). It does not say what the annualised relapse rate prior to taking D3 was (a large study might negate this, but only 30 something people in each group absolutely does not!). The fact that it used only mildly affected MSers means that it is not generalisable or, in fact, is even very useful. It does not even tell us what the weather was like during the study period (the placebo group may have been receiving loads of D3 every day too!). Etc.

Most importantly, selective research is not good research. By this I mean that a single study tells us nothing! Why not cut and paste all the other studies about D3 and MS - which show the opposite to this one?

Personally, I find the evidence sufficiently convincing that I take what Professor Gavin Giovannoni (Barts, London), one of the world’s leading MS specialists, recommends: 5,000iu a day. Why not have a look at his website: multiple sclerosis research blogspot, where research is explained and not just cut and pasted?

Incidentally, people with oesteoporosis are recommended to keep their D3 levels above 100nmol/l. Not only can you not achieve this on 400iu a day, how on earth can someone therefore claim that doing this is bad for bones?!

19

Hi all,

What an absolute godsend these forums are. Just knowing of others out there with similar symptons makes me feel that I am not going mad! Luckily I have not yet had motor sensory problems. I do a power walk every day at work with a friend although i am the one very much out of breath and struggling to keep up! We have been doing this for almost 2 years now and although I do persevere, I think it should be much easier for me by now!

I am hoping to get in to see my doctor tomorrow and will speak with her regarding the Vit D3 and advise her of MS diagnosis and see what support I am given/advised of. I will report back with her comments.

I do get extremely tired, in fact, I spent most of yesterday horizontal on the sofa! This however I can put down to my recent diagnosis of diabetes or gyno issues as well!

I find strength in the fact that others of you have also mentioned your alcohol intolerance. The episode I experienced where I can’t remember anything (which also resulted in me collapsing at home, falling out of bed and mumbling about had enough and doing myself harm) scared the life out of me! I was extremely humilated and embarrased which has basically stopped me having any alcohol!

I don’t think the diagnosis has really sunk in yet. I went for my results, not expecting MS although I knew that was what all the tests were in aid of. I even made him repeat it, as though I had misheard!

My biggest fear is having to taking injectable meds! With the battery of blood tests and needles I have had to experience in last several months have been more than enough. I tend to have one decent vein in right arm, the last nurse who took bloods mentioned it was difficult and that I seemed to have bit of scar tissue!

Good luck for those who are still waiting diagnosis. I do feel better being diagnosed in one respect as at least I know and can get on with stuff.

Thank you to everyone for your stories and advise, I find them of a great help to me and totally invaluable.

Karen x

20

Don’t worry about the injectable meds. They are injected either under the skin or into muscle - not into a vein. They are also VERY easy to inject! There are “autoinjectors” available too, so all you have to do is get the machine ready (dead easy), hold it against your skin and press a button. I’m on Rebif at the moment, and the needle is so fine I can hardly see it without my glasses on!

The thought of self injecting is much much worse than the reality!

Karen x