Confused and upset

New diagnosis and before diagnosis
1

Hello,

I’m very new to all of this so apologise in advanced. I don’t know we I’m here, I just think I want some reassurance. I don’t want to give too much away because I don’t want anybody who knows me to know anything yet. But I’d like to share my story.

I recently had some symptoms which mimicked a stroke, numbness down one side, blurred vision, memory loss and difficulty speaking, I was taken to hospital by ambulance and admitted to the stroke department. They then gave me a CT scan and an MRI scan followed. After around a month of still feeling shocking, no energy, sleeping after very little activity and a constant headache, with around 5/6 less severe relapses of the initial incident, my GP told me that my scan had shown I have MS. I was mortified, pictured myself in a wheelchair losing control of my body and ending up being stuck in a useless body going crazy.

I then found this website and it all seemed to make sense… The numbness in my leg etc and then unrelated symptoms… I was being tested for glandular fever 6 months ago as I just have no energy at all and I’m always ill, I get water infections at least once a month and lose some control of my bladder, I suffer with IBS. I then had an image in my head that my life would actually get better, that all of my ongoing problems would be explained and I’d understand what was going on with my body.

So for around 2 weeks I was feeling positive, my symptoms still came and went but I didn’t panic, I had an answer. Then I saw my neurologist, he said that the scan showed three or four patches where some change has happened in my brain, but it isn’t severe enough to point to MS, if I had MS he said it would be much worse, but surely it could be the early signs?! He couldn’t tell me what it meant but said that he thinks I’ve just had a migraine and brushed everything off. He’s willing to do some extra scans and an eye test to see of anything shows but has basically written it off.

I feel like I’m right back at the beginning, I don’t particularly want to have MS but it gave me some kind of answer and peace of mind. The stress has made my speech shocking, I stutter constantly, cannot think of the right word, my head just seems to be working 5 seconds slower than it should be, my numbness is now coming and going more, I’m so tired, im sleeping for 15 hours each night and I’ve got a constant headache.

I don’t know what I’m expecting from this, I just can’t seem to cope at the minute, I’m spending most of my time sat crying. I need to be positive but I’m finding it so difficult.

Thank you to anyone who has read to the bottom, I appreciate you listening to my waffle,

Dot

2

hi dot

it is awful being in limbo, so i understand why you are upset.

see your gp and explain how the lack of any diagnosis is upsetting you.

tell your gp about any new symptoms.

this is because your gp will enter them on your medical records.

will you be seen by your neuro again?

have you been given a telephone number for him/her?

meanwhile there are a few things that you can do to relieve the worry and upset.

mindfulness meditation is really helpful. your gp may be able to refer you to a course but if not there are a lot of mindfulness materials that you can download.

meditation doesn’t mean sitting in a lotus position (if only!) it just means that you concentrate on your body, bit by bit.

it doesnt take long. i have the sessions on a MP3 and use it as and when needed. mine has a choice of short version and long version but neither takes more thn 30 minutes.

now for your bladder. you can self refer to a bowel and bladder clinic or ask your gp to refer you.

the nurse at these clinics are marvellous. they take the embarrassment out of it.

the nurse will scan your bladder (like a baby scan) and see if you are retaining urine.

you will be talked through what you need to do and may be offered catheters.

don’t go thinking “shock/horror” because they really aren’t difficult to use. the security of knowing that your bladder has emptied fully before you go out is brilliant.

really with ms or without ms, symptom management is the key.

ask on here if you want advice on another symptom and keep your gp in the loop.

carole x

1 Like
3

Than, you for taking the time to reply.

I’m seeing the neurologist in 6 or so months, he said if any of the tests highlight anything he will be in touch but as of yet I haven’t had any appointments for the tests. My GP is really concerned and rings me each week and I feel that I am able to talk to him. After I wrote the message on here I had a look through some of the other posts and there are things I experience that I didn’t even think to link to it, for example my eyes seem to play tricks one me and I see things on the right hand side, like spiders running down the wall.

I just feel alone, I don’t want to talk to my family because I feel like I’m being a drama queen. My partner is great but I can see him struggling with the stress and don’t want to make him worse. I feel so low, I’ve been depressed before and don’t want to go back down that road, but I can feel myself being dragged. I’m not at work and the time sat at home is giving my mind lots of time to think about it all. I’ve tried going out and seeing friends but I can’t seem to follow a conversation with them and end up with a really bad headache, I have to come home and sleep.

I think that last week I had the stupid idea that it was all linked and I’d be able to treat the cause of everything and my symptoms would just disappear, now I feel like I’m faced with a long journey and no symptom relief at all. My GP has put me on beta blockers now, so hopefully they might do something.

Thank you for listening

4

You don’t ‘need’ to be positive; you are having a very worrying time of it, and it is OK to feel bad about that.

It is also OK to be feeling beaten up with all the is it/isn’t it about MS. All change, even good change, is a strain, and it is no surprise that a seeming reprieve from what had looked like an MS dx has left you feeling no better.

This is all very tough stuff. No one takes this kind of thing in his/her stride, believe me. Please don’t be hard on yourself. It can sometimes help to stand back and think how you would advise a dear friend in your situation. My guess is that you probably wouldn’t be telling him/her to get a grip and pull him or herself together… See what I mean? Please try to be your own kind friend and be gentle with yourself. You will find your way through all this, I promise.

I don’t think that you are now right back at the beginning at all. You have documented strange stuff going on. You have an abnormal MRI scan. You have other tests in the pipeline, so you are not even at the end of this phase of investigation yet. All I would suggest is, please try not to think too far ahead: you don’t have enough information to make that useful. Just try to plod on and take things one step at a time. When all the test results are in, then it will be time to take stock, and even then it will more than likely be a case of resigning yourself to a period or waiting and seeing and hoping that whatever was mysteriously causing the problems has gone away. All hard on the nerves, I know. But one can’t really force the pace with these things.

Also, Carole’s suggestion about keeping the GP in the loop is a very good one.

Hang on in there!

Alison

5

Thank you, I’m feeling a whole lot better knowing that people are listening and reassuring me. I think that’s all I need at the minute, support and reassurance, which I am getting at home, I just think I needed to speak to people on the outside too.

I’m expecting a long process of finding out what’s wrong, and I’m realising that treating my symptoms at the minute is the priority to get me back on my feet. I guess taking things one step at a time is the key and not trying to rush things forward by being impatient.

Thank you x

2 Likes
6

Its maddening isnt it.

I was told by a neurologist he wasnt sure if i had MS or not this was going back several years (i was diagnosed about 4 years later). But on a visit to hospital for something else Neurological, it had on my notes I was seeing a certain Neurologist for my MS lol…before my diagnosis lol.

IF it is MS it will present itself again. It does sound scary what happened to you, and something obviously did.

Now I would take a deep breath for now and enjoy the holidays with your family.

Diagnosis can be a long road. You have a fabulous GP who believes in you which is so good.

It could have been an isolated incident, and the neurologist is just being cagey. They cant I believe give an MS diagnosis officially unless you actually match all the criteria, but they can leave it on your notes as possible, which I expect he has done. No point in worrying you if its not necessary if that makes sense.

Try to relax and just enjoy yourself for now. Stress is so bad for you. Sending you massive hugs, things will get better you will see, just have some faith. xxxxxxxxx

7

Thank you, I had another episode on Thursday. Went straight to my GP and he gave me some steroids which seem to be working this time. He’s adamant I’ve got MS and said he will treat is as an MS episode each time it happens. It was a little bit different this time but generally the same symptoms again.

I’ve started getting really bad neck pain as well, like I’ve slept funny but it’s all day every day, not sure if it’s relate or if it’s just stress but i can’t seem to shift it.

Thank you for your lovely message, it’s lovely knowing that there are people I can actually talk to about it all.

8

You poor thing it does sound like an MS episode, and if steriods make you feel better…

Before my diagnosis i was offered 3 days in hospital with I.V. steroids, but when i was ready to go after a bad relapse of whatever it was, they couldnt do it as I had another UTI, and my bone scan was not very good…

I get neck pain a lot it just comes and goes, sometimes i could scream with it, in fact there is a post on everyday forum, about ear pain and neck pain…mine will be horrible and i feel like screaming, then it just goes lol.

With relapses you find you can have new symptoms which should last over 24 hours, and sometimes longer, and will go eventually, sometimes you get old symptoms come back. Its a rollar coaster ride.

I just so pleased you have such a great GP.

Try not to stress too much though hun, as it will make your symptoms worse which can be an exacerbation rather then a relapse ok.

Enjoy your Christmas. Without forums I would have been a right old state lol. Big hugs. xxx

T

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I think I’ll be the same, this thread is making me feel so much better already and I’ve had a little look on the others ones in this forum. I’ll have a look at the other forums when I’m ready, I still feel very nervous and new to it all so I’m taking my research very slowly lol

I get UTIs all of the time, didn’t even realise it was a symptom until I came on here, it’s crazy the things that link together!

I’m out of bed today and I’m going to attempt to go out, I hate giving in!!lol

Thank you so much for taking the time to talk to me, you’ve helped so much! I don’t feel so alone anymore, I know I’m not the only one going through it.

Have a lovely Christmas and new year, I’ll be thinking of you xxxx

10

Hi Dotty,

there’s always someone on here to help answer your questions, so don’t feel that anything you’re worried about is silly. I’ve always felt a bit clearer once I’ve written everything down, sort of puts my thoughts in order! It certainly sounds like you’ve got a great GP who will listen to you, many don’t. I’m pleased the steroids are starting to work for you. I’m wondering if a short course of antidepressants may help to get you through this particularly bad time, they sometimes help to control the pain as well brighten your mood? Having lots of UTI’s will be making you feel really low too, but I expect you’re already getting that sorted…bit of a catch 22 thing…feeling low, get UTI…get UTI, feel low…

Take everything at your own pace & be kind to yourself There’s a huge fund of knowledge in this forum, as you’ve already found, so keep popping in, everyone wants to help you x

Rosina x

11

Thank you I definitely think that writing it down had helped to organise my thoughts and clarify my thinking.

I was on antidepressants a few weeks ago for the headache but they made me sleep for England so my GP took me off them. I think I just need to get through this and try to get back to some kind of normality after Christmas when I can hopefully go back to work. That’s the biggest thing for me, I just want to have some kind of normality.

Thanks again x

12

Hi Dotty

Given your GP has a different view to your neuro I think this needs to be clarified and explained. GP’s cannot diagnosis MS so where did he/she get the information from? If it is from the scan report there shouldn’t really be much room for confusion. Have your medical records been shared with you? Your GP should have them. Communication can become lost in translation and its sometimes helpful to have things in writing.

MS can mimic other things and it’s positive you are being sent for more tests. Do you know exactly what these tests are and have you been given any diagnosis at this stage? Your symptoms must have been quite severe to have you admitted so I can understand your anxiety and frustration of not knowing what caused them.

You can if you chose ask your GP to refer you elsewhere for a second opinion. Not all neuro’s specialise in MS. Hospital websites will tell you what each neuro specialises in.

13

One other thing is that GPs aren’t allowed to give meds for Ms without a diagnoses I’ve just been given baclofen from my GP cause I’ve been waiting since September for Ms nurse to contact me but I know nothing about relapses as I have been progressing for nearly 2 years and diagnosed September I had a gp that told me when I could no longer walk without aids nothing was wrong after a year of deteriorating I change GPs and thank god, my new one is great neurologist may require more tests for a diagnoses, lumbar puncture and vep but good luck :slight_smile:

14

Hi,

Actually, GPs can treat a symptom without a confirmed diagnosis, if they think it’s appropriate. They don’t need a consultant’s permission to prescribe, say, Baclofen, if spasticity is evident - even if they’re still not sure what’s causing it. In fact, they don’t need a consultant’s permission to prescribe drugs for most symptoms. Most of them are not dedicated MS drugs, and are prescribed to other people for other conditions anyway, so it’s within the GP’s remit to prescribe them, if they think it might be helpful.

It’s true that some of them are not overly keen - I encountered resistance to prescribing Baclofen, even after I was diagnosed. The hospital said I needed it, but were unable to prescribe due to a simple computer glitch, but said they’d instruct my surgery to do so. The surgery wouldn’t! But kind people here pointed out that GPs are allowed to prescribe it, and that their GPs were doing so, and armed with that information, I was able to make a fuss, and say: “Look, I know you’re allowed to prescribe it, so what on earth is the problem?”

The one thing GPs (and even a lot of neurologists) are NOT allowed to prescribe is DMDs. Not surprisingly, these do require a firm diagnosis (as well as meeting certain other criteria about frequency and severity of relapses, and ability to walk). You cannot be prescribed a drug with the aim of changing the course of a disease, if it’s not even clear you have that disease.

But generally speaking - symptoms - fine.

It is worth considering a change of GP if they refuse to treat a symptom without a confirmed diagnosis. Although all drugs have risks, the risks associated with most symptom relief drugs are fairly low, and there’s nothing that makes it more dangerous to take them if the cause turns out not to be MS. I’ve a sneaking suspicion it has nothing to do with either the law or safety, and much more to do with budgets. The GP’s surgery would prefer a prescription to come off the hospital’s budget, and will try to hold out for that.

Tina

x

15

I just want meds for stiffness fatique and LDN but my neurologist doesn’t think it helps but I want it and not giving up I asked gp he’s ringing me in a week after he does some research as he said only consultants can give it and mine refuses but on,y cause he thinks it doesn’t help but he’s great, if your gp isn’t helping change I had mine for years and I changed cause he told me nothing was wrong then my sister tells him I have Ms and he was like “oh I never considered it cause she’s too young” I was 34 just turned 35, don’t wait as long as I did to change I had no idea it was Ms until April but good luck don’t go through what I did.

Yes you are right Tina on baclofen I just started 10mg half 3 times a day I’m hoping it helps.

Thanks x

16

Hello,

Sorry I’ve taken my time, my GP is adamant I’ve got MS, he says that the scan shows it and my overall symptoms definitely point towards it, my neurologist wants more confirmation so is sending me for another brain MRI, neck scan and an eye test. My GP has been the same gp for around 20 years, so he knows the bigger picture, not sure whether this helps or hinders but he’s usually fantastic and I trust him completely.

My GP is treating the relapse so I guess he’s treating the symptoms rather than giving me MS specific medication? I don’t know enough about the medication to know but he has given me prednisolone, which seem to get rid of the headache and the numbness down my side. I still can’t do anything too energetic though, I went to my friends yesterday and ended up asleep in the car on the way home! I’m starting to wonder if I’ll even be back to any kind of normality ever again.

17

Hi Dolly for a relapse you are better off with I.V. steroids, which is done in hospital. You go in for a day and they give a days worth, then you come back for 3 days…I was offered I.V. steriods even though i wasnt fully diagnosed, but on doing tests i had UTI, and poor bone scan so couldnt do it.

The thinking is that prednisolone is not strong enough for an MS relapse and perhaps that is why you are not feeling the benefits yet…

18

Ah right, that makes sense then. They are the only thing so far that have taken the edge off but still not ‘cured’ anything. I’ll see how I feel in a few days when I finish them. It’s all so confusing at the minute, I think I’m at the start of a very long journey!! I don’t think I’ll actually get anywhere until the neurologist has made a concrete diagnosis, but at least my GP is trying bless him.

19

I wonder why the neurolgoist is hanging back. If the GP thinks you have it, there must be good lesions to show up…very odd. They are a law unto themselves though.

I just had to have the doctor out, got another really bad UTI, joys of MS…

20

Oh no!! I get a UTI almost every month, they’re horrible!

My scan shows three quite big lesions, the neurologist says there needs to be more and it has to be over two/three scans and it can’t just be the scan that they use, other tests must show it too. My GP is looking at my symptoms as a whole and putting the pieces together I think.

It’s a good job I didn’t expect it to be simple!!lol