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Feeling very down - possible MS.

(46 Posts)
fififrog Tue 14-Jul-15 16:41:20

I posted this earlier on MS society talk pages, but nobody has replied - I am feeling very low and was hoping someone might chat to me. I figure mumsnet has more traffic hopefully! I feel like I am dealing with vague issues alone. I don't have a firm diagnosis, and am suffering from the anxiety and in-limbo feeling that this causes.

Four years ago just after my daughter was born I suffered a severe and sudden episode of double vision and partial facial paralysis. I was treated with strong steroids, which cleared the problem almost instantly. I had an MRI and lumbar puncture, both of which indicated that there was a strong chance that I have MS, but was told that diagnosis would not happen unless I had any further attacks.

Now I am suffering all sorts of odd symptoms that could be related or not. My vision is affected by a sort of shimmering affect like a migraine aura, only it never develops, just comes and goes but I've had it for around three weeks now (I think!). It also feels like my right eye is looking through a window but my left isn't - hard to explain, but my right eye just doesn't seem to be focussing quite as well. I've got tinnitus, which I usually have, partly because I get blocked ears a lot, but I feel it's worse than usual. I feel a bit nauseous, a bit dizzy, sometimes a bit disassociated. I also get a slightly tingly feeling across my back when I bend forward - again, this is nothing new for me and GP previously told me not to worry about it and many people have positional issues that cause slight nerve tingling. I am also suffering a bit from what I think are anxiety symptoms: my heart is beating hard, my normally slightly shaky hands are more shaky than normal. I've also got random itches all over the place. All of these symptoms come and go in various combinations.

I have been referred to the neurology dept for an "urgent" appointment, which means I have to wait over 2 months! My GP has said if it gets worse to go to the A&E, but really last time it was all so horrible that I don't want to have to go through with that again if I can't help it. I also feel that on the scale of things my symptoms are very minor so I shouldn't complain, and there's really no need for A&E but I am feeling very upset and anxious.

I suppose I am partially worrying that it could be something else entirely that needs treatment before September. On the other hand I'm also worrying that if it is MS, given it's not very severe, perhaps it's not an "attack" - I'm now starting to think that perhaps it has just been a gradual build-up of symptoms over the course of six months or so, and that this is just a general deterioration in health rather than a relapse. My husband tells me of course it will go away again, but I am scared that it won't.

Obviously, if it's progressive rather than remitting there won't be anything I can do about it, but I'd be interested to hear whether anyone who does have relapsing-remitting has very mild relapses?

Any advice on how to stop myself worrying? How to explain my worries to my family without upsetting my little girl?

Saltedcaramel2014 Tue 14-Jul-15 16:51:51

Hi OP. I'm sorry you are going through this - both the symptoms themselves and the sensation of being in limbo. I'm afraid I don't have any advice to give, i only know a little about MS, but I'm sure someone knowledgeable will be along in a minute.

How old is your little girl? It's important you share your concerns with your family, as it sounds like you're wanting to.

Perhaps in this two month wait you could focus on easing the anxiety - would you consider counselling/yoga/swimming? Or just meeting with friends. Hopefully your current symptoms wouldn't stand in the way of that.

DipsoHippo Tue 14-Jul-15 17:03:08

I have relapse remitting MS, diagnosed 5 years but I believe I had symptoms for a long long time. Small things, that would come and go, but nothing you'd necessarily see a doc about or maybe even notice at the time.

These days, I have more noticeable (to me) symptoms but not all day every day. I am probably not explaining this well, but some times I don't notice I've had a symptom (e/g tingly arm) until I am in bed at night and I realise "oh my arm has been bugging me all day"

Relapse-wise I've "only" had 2 full-on ones where I've ended up in hospital on steroids. The first one led to my diagnosis- it came on for months (in retrospect), at the time I just thought I was run down, tired, had a trapped nerve (my hand went numb)...

The second one was last year, so 4 years in between. That one affected my eyes.

There are a LOT of symptoms, and "they" say that no 2 MS patients have the exact same.

I know it's scary waiting for an appointment/ diagnosis, but it is an illness that they diagnose by ruling out other things. 2 months seems a long time, but I'd spend it writing down EVERYTHING, even the things you think aren't significant. See if there is a pattern every day. There are apps for it, but I don't know if that's a good idea before you actually get (AND IF YOU DO) diagnosed.

PM me if you like, I can direct you towards some online info, and I am happy to give you more details about my own personal circumstances

Take care xx

fififrog Tue 14-Jul-15 17:24:58

Thank you both very much for your advice, and for being there to listen.

Caramel I'm open to anything - I already do yoga-like stuff and am trying to keep that up, even though I don't feel like doing any other exercise at the moment. I definitely need to work on the anxiety! Hopefully talking to people will help some too.

Dipso that all sounds very much how I am feeling. I am constantly wondering whether in fact these symptoms have been going on for ages and I've only just noticed them because I am connecting them into a relapse.

My husband, who was actually very helpful when I called him earlier at a low ebb, also suggested writing everything down. The only downside I can see with this is it will force me to dwell on it! But then, I guess I've been thinking of little else these last two weeks. It's so easy to become paranoid as well. I keep thinking things like: was my typing this rubbish two weeks ago?

I guess the other thing I should be writing down is all the questions I want to ask. That was a major issue for me 4 years ago, but then I did have a newborn so I wasn't exactly in a good place to be thinking of Important Questions.

Trying to keep my chin up, I just wish the headache would go away...

DipsoHippo Tue 14-Jul-15 17:43:51

I missed the part in your post about having a newborn at the time. Women with MS often relapse soon after having a baby. I've not had kids yet, but friends of mine have had this happen to them.

If your eyes are annoying you, consider getting a patch for the weaker one.. I had Optic Nuritis last time, and my right eye couldn't focus at all. I felt sick as a DOG... it was like being drunk without any of the benefits. I got a patch from the chemist- a sticky yoke like a big plaster, and it helped no end. Your eyes will give you a headache if they are trying to focus to hard. Even to wear while you are on your PC or watching TV, it will help.
This is coming from the IDIOT who went to work as normal and typed for a full day with one eye shut.

Things that you might consider, which can apply to all people with MS or not:

Try to get some Vit D, either in tablet form or from natural sunlight.
Yoga/meditation (I don't do this at all, it's on my to-do list)
Healthy diet- there is conflicting info about if diet causes/effects MS. I don't think (in my opinion!) that it causes it, BUT I think my symptoms are less "annoying" if I eat well- so plenty of fruit, veg, home cooked healthy meals, cut back on crap etc
Plenty of rest- get sleep when you need it, if you need a nap on a Saturday afternoon, take it. I understand that life doesn't always allow it, and I am the ultimate cranky sod if DH tries to suggest I need a rest, but it does help

The above won't do you any harm if it turns out you don't have MS, and might help you feel better either way

(I should keep adding that "you don't know what it is yet, if anything")

fififrog Tue 14-Jul-15 19:43:50

thanks again Dipso - I may PM you at some point indeed, it's good to know there are people who understand and have some good advice.

The MRI and LP results were both positive if you know what I mean. Neuro said "80% chance I'd have another episode, 50% chance within 2 years" so at least I beat the 50% odds :-)

I think one of the hardest things other than keeping chin up for DD is knowing what to do about work. I'm finding it quite tough - can't concentrate etc. But don't want to tell anyone what's going on...

TwinTum Wed 15-Jul-15 11:41:14

I had "clinically isolated syndrome" about 18 months ago. Sounds pretty similar - facial palsy, optical neuritis, vertigo. I had an MRI which was equivocal but decided against a lumbar puncture. I have private medical insurance through work so was able to have a follow up MRI scan after 3 months (no change). I could also have one every 6 months if I wanted (to look for new lesions which are not always associated with symptoms). I was going to and had one booked, but decided against this as it made me worry more and think about it when generally I am able to forget about it on a day to day basis (once I got past the initial few months). I did though have a period when I was a bit worried about my arm (felt a bit numb/tingly on/off over a period). I booked an MRI then and again no change. The dr said the arm thing might be associated with MS but could be unrelated so without a change in the MRI there was no diagnosis.

SO that is the approach I have decided to take - not to go for the regular scans, but to book one if there is something I am worried about (so therefore I only focus on it when I would be anyway).

I did at the recent scan get given the 80% figure that you were (80% chance I would end up with a diagnosis within the next 20 years) but not the 50% within 2 years figure. I did share this with Dh and a couple of friends. I think though it is quite hard for people to really understand the potential worry because I seem completely fine and it has been quite a while now since my original episode. People tend to associate MS with wheelchairs and sticks and pretty much permanent limitations. So I suspect they think I am exaggerating the likelihood!

I make sure I get a lot of vitamin D (I took some supplements in the winter) and my vitamin D levels test as high. Otherwise, I have not changed anything about my diet or lifestyle.

HyacinthBouquetNo1 Wed 15-Jul-15 11:45:09

Hi, I really feel for you, I am currently waiting for a lumbar puncture and visual evoked potential test. My brain MRI has shown areas of high signal intensity in the white matter. I only found out the other day and have hardly slept since for worrying and stressing so I know exactly what you are going through. I have been told for the past 18 months that all my probs are down to fibromyalgia, even though I have no muscle pain, just neurological symptoms, dizziness, unsteadiness, fatigue, tingling face and tongue, crawling flesh.

I can relate to the dodgy vision, I have exactly the same and it has been like this for the last 3 years, I have been so worried about my eyesight, it started as a ripppling effect in the peripheral vision, mostly in the morning and evening when tired. I also notice that straight lines, eg: on doorframes, seem to jerk around. My vision is like an old cinecamera! I now have double vision on looking left. I have been to so many opticians since, averaging around every 5 months, only to be told that my eyes look normal! I consulted GP who told me that I had "over excited nerves" , or maybe I was stressed! arrgh

so I am now in the waiting phase, not knowing what these MRI abnormalities mean but at least now I might be on the right track to finding out what the problem is, I was never convinced by the fibro diagnosis.

I will bookmark this thread, its good in a way to know I am not alone

take care OP

MooseyMouse Wed 15-Jul-15 22:18:28

I have MS and I'm lucky. For me it causes almost no problems apart from the odd weird thing (like a bit of numbness). There is loads they can do to slow it down and there are treatments for specific symptoms.

Diagnosis was awful but living with MS has been fine for me. Hang in there because there's life on the other side of diagnosis whatever the outcome.

smokeandfluff Wed 15-Jul-15 22:33:02

Hi, my dh was diagnosed with Ms 5 years ago. He had double vision, and was lacking power in one side of his body. He also had other random symptoms. We ended up going to a and e, and he was diagnosed by a neurologist and admitted for iv steroids. The diagnosis was actually a relief -he thought he was going mad with all these weird symptoms, it was great to have a doctor listen to him and tell him they were all linked and he wasn't going crazy.

He did use an eye patch before his diagnosis, but the optician in the hospital told him it wasn't a good idea as it makes the eye lazier and the muscles around the eye get weaker as you are not using them.

Since diagnosis he is on regular medication and has only had one slight relapse which was treated with steroid tablets.

Hope this helps

fififrog Thu 16-Jul-15 11:16:22

Thank you all for replying, even though I'm sorry you're all going through this too it is really nice to know I'm not alone. I am just so fed up with feeling unwell already and it's only been 3 weeks! I will go nuts if I have this vision thing for 3 years Hyacinth, that is truly awful. I just can't believe that you have been waiting so long for answers.

I just feel like going and camping out in the corridor like a madwoman until they see me. The steroids were so effective last time, I just feel like I am sitting here feeling like cr4p waiting for it to get bad enough that I collapse or lose feeling in my limbs, or can't see, when if I could have a dx now I might at least have a chance of some treatment that might help and potentially access to some drugs to slow the progress

I am really scared they'll just say nothing (when I finally get to see them) and "we have to wait and see"... at the best I expect I will end up in another chain of waiting for an MRI/VEP test and another 3 month wait for neuro. I really really wish I had health insurance now...

Everytime I see my DD I just want to cry. I feel so awful that I don't feel well and don't feel up to doing much. But at least seeing her is about the only thing that is making me happy right now. So at least I have that <smiles weakly>.

fififrog Thu 16-Jul-15 11:20:33

PS If I can get myself out of this misery and off the sofa (which I know I must do...) I am off to buy VitD - might as well at least try to help myself.

Fingers crossed we all get some progress soon

catsrus Thu 16-Jul-15 18:55:57

Can you afford to pay for a private consultation? It's usually in the region of £100 - £200. It's often that bit of the process that takes longer - the getting to see the consultant. Once you've seen them you can still be treated on the NHS. I fast tracked my dd (IBS like symptoms) that way when we were told two month wait, similarly my friend got back treatment done.

I do know something about MS as I was diagnosed with it 25yrs ago, then after a second episode 7yrs later a second neurologist said it wasn't. As you know the symptoms are hard to pin down - and because they come and go it's important to be seen when you have them!

Momzilla82 Fri 17-Jul-15 17:49:42

Hi OP. I'm currently in a similar shitty boat. Except I've just been referred to neuro and I have to wait til the end of October!!!! I mean, I get that I should be grateful to live somewhere with free medical covwr- but symptoms could also be brain tumour- what if those 4 months were important? I'm in despair

fififrog Sat 18-Jul-15 08:14:00

Hi folks has been a busy few days. GP suggested seeing neuro privately, but turned out reason it's so long is mostly because he's away for most of the next month. Was beginning to regret asking for a different Dr from the previous time, but the secretary from the private hospital said "he's very popular" - which I took to imply he must be both personable and good, so I thought I'd hang in there.

Anyway, I was just debating whether it was worth £200 to see him on 3rd Sep instead of 17th Sep, when the hospital called me up yesterday to say there had been a cancellation could I go in at 1.30! Luckily my job is very flexible so I scooted straight round.

He was good. Listened to everything, looked at my old MRI with me (even showed me my ankle MRI which I haven't seen yet as I'm also waiting 4 months for my ankle follow up appt...). Said def worth probing more deeply to look for MS. But many symptoms could be migraine and I already knew quite a few of the others could be stress/anxiety. I had no idea that muscle twitching could be stress though. So now waiting for MRI again and visual evoked potential. Feel much better already - hopefully that's the anxiety subsiding.

Really hoping it's migraine, obv, though if so that is the mother of all migraines...

Mumzilla and anyone with a long wait ahead of them. I really really hope you have good GPs - mine are excellent - anyway, ask them to phone the neurologist and get you put on the cancellation waiting list. I have no idea why this doesn't happen automatically.

Also, having now spoken to the neuro and done some research into stress symptoms, it is clear these can be quite severe. It is inevitable that with MS or other serious conditions hanging over you, you will feel stressed. Easier said than done, but trying to minimize these could make you feel much much better. My nausea has pretty much reduced to nothing overnight (touch wood).

fififrog Sat 18-Jul-15 08:16:02

Also Vit D currently half price at Holland and Barrett smile

DipsoHippo Sat 18-Jul-15 10:21:22

Glad you got your appointment, and that you got on so well with your neuro, he sounds thorough which is great. Hopefully it is a migraine, and that you get to the bottom of it.
Stress really doesn't help. I am trying to follow a programme called OMS (Overcoming MS) and a lot of emphasis is placed on meditation/ mindfulness to keep stress/anxiety/mental health on an even keel
You sound more positive, I can feel the relief from your post. Have a lovely weekend with your family, and I hope you feel better soon x

fififrog Sat 18-Jul-15 14:26:13

Yes indeed Dipso, much relief at being in the system, and luckily been feeling quite well the last couple of days, with headache, vertigo and nausea much subsided even if the eye is still bothering me and I'm still knackered.

Also, the other thing that helped was he said if it is MS, there are many more treatment options available now than there were even 4 years ago, so he said it's not as bad a situation as you might think. That also made me feel more positive

Momzilla82 Sat 18-Jul-15 14:30:31

That's fantastic news! flowers for you.

I'm ringing around all the hospitals to see if they have wait lists for cancellations. The one I'm booked for said they have such a long list it isn't practical to keep a cancellations list- but I can call back every week to check in on any that come up. I'm going to be irritating and call every week.

On the other hand my parents have offered to pay for Bupa treatment to get me a diagnosis quicker. I'm not sure I can manage 4 months over the summer, looking after two boys whilst my mobility gradually gets worse. Plus I have to think about what to do about work. Bupa could see me next week for just over £1000 including tests. Lumbar puncture was almost £6k!

It's difficult to know what to do. I just never thought age 32 Id be laying in bed listening to my kids playing outside whilst I rest. I am not good at this. Being dependent.

Momzilla82 Sat 18-Jul-15 14:32:10

And sorry for the pity party. confusedblush

fififrog Sat 18-Jul-15 21:02:37

Crikey Momzilla you sound like you're in a very horrible situation, that's a tough decision to make. At least I have just been very exhausted and feeling sick and with a grim headache - I've not had any mobility issues so I decided I could wait until Sep (and knowing what happened 4 yrs ago, I know that if you suddely have major double vision + facial paralysis + whatever really serious that A&E is an option and then it all gets going v quick). I agree when you're thinking "this could be something even worse"... I did ask the GP whether there was any chance it could be anything that really needed treatment and if so what should I look out for, but in my case they were pretty definite that MS was the most likely "bad" outcome.

The other thing the GP did was make sure my appt was marked as "Urgent". I think perhaps getting the GP badgering them was helpful - I also called up the number on my letter myself to ask about waiting lists and was told "we don't really do that" but it was the GP calling the neuro's secretary personally that did the trick.

Can your parents afford to pay £1000? If they're well off perhaps it's worth taking them up on that offer. I am sure they can't stand to see you suffering so. My birthday's in a couple of weeks and mum said we could all chip in to buy me the neuro appt for my birthday... I said "thanks, but I'd rather have something nice".... Can't imagine a more awful birthday prezzie, though it was meant well!

Can't believe a lumbar puncture is £6000!!!!! I knew we were lucky to have the NHS, but I didn't realise quite how lucky. I will have had 1 Xray, 2 MRIs and a CT scan plus the evoked potential thing this year... Don't even want to think about how much it'd add up to!

Take it easy. Hope your kids cut you some slack too :-)

Shenanagins Sat 18-Jul-15 22:32:34

I hope you get the answers soon. If it is ms, try not to despair and do not read the Internet as that will scare the living daylights out of you.

A ms diagnosis doesn't necessarily mean your life has come the end as you know it.

Like Moose, I'm one of the lucky ones, I'm incredibly fit ( hiit training/long distance running), a good career, two young children. Very people know that I have it and would be shocked to find out that I have it as I don't fit the image people have of the illness.

Whatever the outcome, your life will go on so try and stay positive.

Momzilla82 Sun 19-Jul-15 20:25:44

Thanks ladies. I've been a bit better today- we made it to the zoo and my symptoms haven't been too bad today. Just so unpredictable. I long since stopped googling! It was too scary. The only Google use my phone is getting is the neuro secretary at all the hospitals I'm willing to travel to.

I'm 95% ok with my parents paying for Bupa diagnosis- just because I don't think waiting 4 months is in anyone's interests. I may be lucky and have a mild form. But if you need two episodes to be diagnosed I might as well get this one down so I only need one more to be officially diagnosed. Thanks for the words of encouragement. I know it's not the same scary diagnosis as it once was- but it's still pretty scary less than 2 weeks on from symptoms suddenly appearing and accelerating. flowers cake and hope for all

weird2014 Sun 19-Jul-15 20:25:56

I was diagnosed with MS last year and found it very difficult to cope with. It was a big shock and has taken a long time to get my head around.

I see that it may not be MS and let's hope so but, if not, as other people say above, having MS is not a total disaster. Even where you experience daily symptoms as I do you can learn to cope with it and there is a lot of support out there. I have found Twitter and the various blogs to be tremendous sources of support and help you not to feel so alone.

Also happy to chat or answer any questions.

Shenanagins Sun 19-Jul-15 23:32:16

Momzilla, glad to read that you've had a better day. of course it is s scary time and don't be afraid to admit that and ask for support.

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