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I'm 99% sure I have MS and I'm scared

Hi everyone,

I'm on here and making this post kind of as a method to get all the thoughts swimming around in my head out and in order, and maybe to get some advice and ressurance. This might get long so I apologise but thank you in advance for reading it.

I am a 27 year old F. For the past few years I've had random dizzy spells that would come and go. They'd happen, I'd think "that was weird," then go away and not happen again for a few weeks. I thought that standing up too quick or flickering lights were causing them.

Recently, about a month ago, I developed shingles. Nothing particularly weird about that except my partner had had them a few months before, seemed oddly coincidental that two young people would get shingles in the same household within a short space of time but it didn't really matter, I recovered quickly. When I had the shingles, I started noticing odd symptoms that gradually increased in severity. The dizziness I had before was back and happened more frequently and without any trigger. My left arm started getting weird tight "sharp ache" pains, starting at the elbow then eventually all the way from my shoulder to my fingers. My arm then began feeling "wrong," it would get a numb or "not there" feeling, sort of like the feeling when you have been sleeping on your arm but without any pins and needles. 

The shingles have gone, but these symptoms are still here and getting worse. I feel dizzy and spaced out almost constantly. My left arm feels like the connection to by brain keeps dropping out. It gets random pains all the time. My right arm is starting to show the same thing, and my knees are starting to get the same pain. It takes extra effort to move my limbs, they feel heavier than they used to, or that I have to "try more" to get them to do something. When i'm driving, my legs feel really heavy and I finding it harder to move the clutch pedal as finely. My speech and thinking are slower and I think I sound a little bit slurred, or fumbling over my words.

Of course, I went to the doctor as soon as I realised the shingles were gone but these symptoms were still getting worse. Thankfully she has taken me seriously and scheduled a blood test and an MRI. The blood test came back normal, bt the MRI is still not until April. 

I have done that thing of looking up my symptoms and what keeps showing up is MS. I really, really do not want to have MS (nobody does) and am desperately clinging to the hope that these symptoms are a holdover from the shingles and will go away on their own, but every day I get worse and more convinced that it is MS, I have holes in my brain, they're getting bigger and I won't even know for sure until April. And that every day I don't have medicine is going to mess me up.

I am so, so scared and worried that i'm getting worse too fast and that by the time April comes I will be in a state I can't come back from. That I might not be safe to drive and not be able to go to work. Or, even, that I get the MRI and it's something even worse than MS like a brain tumour.

Sorry that just seems horrendously depressing when I know you are all fighting your own battles. I'm just very scared and don't know who to talk to about it.

I have already called my doctor and told her I feel like i'm getting worse quickly and I was worried about waiting til April for the MRI. She said that she'll try to get my a sooner neurology appointment but she can't promise anything. And that if I really get bad go to A&E (???) 

If i'm going to have this I just wish I could start taking medicine now before its too late and I might get permanent damage in my brain. At least if I started sooner I might have a chance to stop some of this.

I bet everyone feels this way in the same position, its just the not knowing for sure but knowing that something is deeply wrong and feeling so helpless.

So yeah thats it. Sorry guys. Thanks for reading it and if anyone has any thoughts of what I can do please let me know. I have even thought about spending what little I have to get a private MRI I am that worried.

It's  the dreaded dr Google again, you will scare yourself silly, try keeping on NHS sites or patient UK and this site. People will answer most questions here, I did much the same as you but I was given a MRI by another hospital doctor sorting out my double vision. Which is one of many symptoms of very many different illnesses.

My MRI came back with demyelinating disease like legions  in my brain and a very quick appointment to the neurologist. 

The only doctor that can say for sure that you have MS is a neurologist. It can also take some time. I went to the opticians this time last year they put me forward to my doctors surgery then to the eye hospital. It was the second appointment to the eye hospital that told me that he wanted a MRI, this was July and I had the MRI in August, saw the neurologist in September and I had my lumber puncture in January the neurologist has given me appointment in early April to see him I am now waiting for the second MRI appointment.  

 It was the doctors letter in October saying that I had demyelinating disease like legions in my white matter or something like that  that made me look up dr Google I can tell you it upset me badly because it came up with MS as the most common demyelinating disease. I still am upset and worried. Do you have any autoimmune diseases like diabetes 1, celiac or underactive thyroid or overactive, because you have more of a chance to have another autoimmune disease if you have them. Myself I have two (lucky  me).

There are people on this site can explain a lot better than me, they won't mind any questions that you may have. Or how long your questions are,  I know it sounds a long time before April is coming but it's only six weeks if your symptoms are really bad as the doctor says go to A&E but be prepared for a long wait they maybe able to help but don't go at the weekend it's busy I had to wait until the next day to be seen and I had to have a emergency surgery two days after my first surgery as it went wrong. Then admitted for ten days afterwards. Not great. 

Hope things go well

Kay

Hi Kay, thank ou for taking the time to read and reply. I suppose lots of people are in the same boat and it's a very scary thing for anyone to go through. I am sorry that you are still no closer to a definitive answer as to your condition. Are your symptoms mostly based around your vision?

I do not suffer from any other autoimmune disease, I did not know having one made it more likely to have another. What do you have if you don't mind me asking?

Although my understanding is that MS is not genetically passed down, there is no history of it in my family. However, my 23andme does flag me as having genes associated with MS, which of course does not help my paranoia.

I would not go to A&E, I can't see how that would help. To my mind A&E is only for serious injuries and illnesses, and although what I am experiencing is serious to me I don't see what going to A&E would do. If I stopped being able to move my limbs which is my big worry I don't know what A&E could do.

I have an underactive thyroid 6 years and celiac 2 years. Most of my symptoms are very light if I can use that word, my hands and fingers tremble (left) I find it very hard to get up off the floor no strength in my legs, I get light headed and feel dizzy, my fingers tingle, I find that going up and down stairs that I wobble and feel as if I will fall down, I if I carry things in both hands to go up or down stairs I spill my drink all over the stairs, or drop things,  also I have double vision it's now treated by my having a prism in my glasses. I didn't drive for a while as I couldn't judge distances very well.

I used to have high blood pressure and took tablets to help but while I was ill (celiac) my blood pressure got very low and made me shiver and shake and I would collapse on the floor (I couldn't get up off the floor without help). They took me off the tablets and now I can go very high if I see a doctor 165/90 (white coat syndrome) or very low 109/65(at home). I don't know if that is a symptom or not but that's where my light headedness comes in to play I think. The last thing is that I have pain in my hip, i haven't bumped or banged it it's not taken away with medication and this time last year i had pain in my left ankle which just disappeared after a few months.

As Ssssue says every one is different and the symptoms of MS are different too, that's why it's so difficult to diagnose as there's a lot of illnesses that have the same symptoms and there is no one test for MS. Anyway I hope this has helped all the best

Kay

I have MS

Hello Moon

First of all, stop panicking. It won’t help, won’t speed up appointments and could be making your symptoms worse. 

Second, what Kay has said is exactly right: stop googling. (I’m so proud of Kay, she’s like a protégée; learned so much in a short time!) 

You can trust the information on this site (see the About MS tab), and the MS Trust, as well as the NHS. 

I would actually suggest don’t even look at those. The symptoms of MS are wildly varied. It’s been called a ‘snowflake’ disease: no two people experience the same symptoms. Also, there are many, many symptoms within the MS diagnosis that are shared with other diagnoses. So it’s possible you have a vitamin deficiency (B12 or D for example) or some kind of ‘hangover’ from the Shingles, or a peripheral neuropathy, or any number of other things wrong. 

Kay is right again when she says only a neurologist can diagnose MS. And then only after s/he has seen you, taken a medical history, examined you and seen the results from tests according to what they believe is possibly wrong. For eg MRI, lumbar puncture, visual evoked potentials, maybe others. 

What you could be doing with your manic panicking is making existing symptoms worse. The brain can do some ridiculous things to our bodies. It’s not that I’m suggesting you don’t have physical symptoms, just that a completely healthy brain can insist to us that things are worse than they are. 

Just supposing you did have MS. It’s not that urgent to have drug treatment right now. Obviously, the sooner the better, but a month or two (for some people diagnosis takes a lot longer than that) isn’t going to make all the difference to you. Essentially, there is no cure for MS. The main drug treatments are disease modifying drugs (DMDs), these are designed to reduce the number and severity of relapses. If you were to be having a first ‘relapse’ of MS, there is no magic treatment that will cure you. The only drug that ‘might’ bring the relapse to its end a bit quicker is steroids. And these are not guaranteed. 

If I were you, I’d make sure your GP has referred you ‘urgently’ to the neurology department of your hospital. You can then always phone the appointments team to make sure they have the referral, that it’s marked urgent and maybe whether there is a sooner appointment for you. Don’t forget, the neurologists appointment is actually more important than the MRI. Only a neurologist can diagnose MS or any other neurological illness. So if the neurologist thinks MS is possible and wants to hurry up the MRI or any other test, they are in a better position to do that than a GP. 

Best of luck Moon, try to relax over what is happening to your body. You are right, MS is a crappy disease and not one any sane person would want, so it’s hard to actually leave things like appointments hanging in the air, when you want action right now. But unfortunately, there’s only so much you can do to speed things up. 

Sue

Hi Sue, thank you. I think I do need someone to tell me to get some sense. I am sure what I'm going through is exactly the same for everyone else who finds themselves in this situation and I should be happy that my GP has at least taken me seriously and I live in a country where getting an MRI is not only possible but free.

I did not know that about the treatment (I did know its not curable) so thank you for that. I think I will do what you suggest and call the neurology dept. on monday just to check the status of the referral. I suppose there are people before me who have been waiting too.

In the meantime I will try to ignore my symptoms. I suppose my main fear is driving and wonder when it would be irresponsible to let myself drive. 

I would absoloutely love it if my brain was making this up and it would just go away. I wouldn't feel embarrassed or like i'd wasted anyone's time at all because I would just be so relieved if this went away. 

I have MS

Hello again

Re driving, only you know if you are safe. I remember years ago my left foot slipping off the clutch at traffic lights and me shooting across the opposite carriageway (undiagnosed at the time) - luckily nothing was coming the other way. The same thing started with my right foot later (much later, about 10 years into my MS), I became worried that I didn’t have the reaction times to brake when required so had my driving assessed at a mobility centre. In fact I was just about safe, but I felt that might only get worse, so had my car adapted to hand controls. 

But that’s what I mean by you will know. If you don’t feel safe, don’t drive. If that means you go off sick from work, then that’s what you have to do. 

I don’t think your brain is making it up, but fear and worry could be adding to your symptoms. So just try to tamp the fear down to see if it feels better. Have a glass of wine (or whatever else floats your boat) and try to relax over the weekend. Talk to your partner about how you are feeling and don’t automatically feel annoyed when they say ‘I’m sure you’ll be fine’. 

Take care. 

Sue

Good evening Moon, I've read all the above posts and you're being scared is totally reasonable although unhelpful to you! You're only young as indeed I was. I was diagnosed with MS some 25 years ago or more and had another 25 years of nothing, nothing lengthy or of note anyway. Now the NHS has agreed to my retirement from nursing since things have picked up a bit. I can still look after myself, live alone with my cat, have my daughter for sleepovers etc... Loved ones, or indeed anyone, who has no personal experience of this darned thing has to be forgiven this blindness, I doubt it's personal just being wishful and scared too. MS, although very troublesome at times, is not the kiss of death by a long way, even though not curable per se. I like the term 'life limiting' because this phrase seems to me to contextualise the whole thing. Life has not ended but there are things that are now harder or indeed impossible. I thought many years ago at the start of all this, 'I can't go running now or play football or stand up to cook' then I thought to myself 'I hate running and football and rarely stand up to cook so what the [removed by moderator] am I thinking about!' Of course there are things that I can't now do that I used to do but the point is that adapting is what people do when bad stuff happens, that's what I did and that's what you can do if needs be. If this is what you have then things will carry on. Searching online for info. will only mislead and confuse in all eventuality. You need facts, and nothing else. MS has very few uniform 'facts' and is usually a personal thing. As the lady above said. Guessing won't help you. Talking is always the best way (and after 30 years in psychiatry I know this to be true) it's also the thing that we humans, usually, do so poorly at! There is a lot of wisdom in what Sue says above. Just to note, driving for me is subject to a 3 yearly review, but I still drive most days, if I'm tired I don't, my call. Auto was the way for me, there's ALWAYS a way of sorting stuff out and don't forget that, it's very important. Most important is stop jumping the gun! It seems no-one actually knows and second-guessing will not be helpful to you. Throughout my working life I have always been struck by how things improve when people are able to be honest, talk to others, share and work with facts only. The same kind of applies to MS. Catastrophising though perfectly normal will not be your friend. Let us know how you get on Regards Jem

Thanks all for your kind posts and support. Been trying to put it out of my mind and not had a bad day today so that's good. Managed to stop panikcing. MRI been moved to March so fingers crossed.