Petrified Ive got MS

[Clarep1905]

So this all started back in June last year. I was getting pins and needles in my feet and a few other mild sensory symptoms.. I went to the Doctor and she sent my for blood tests.. they all came back nearer so she decided to send me to a Neurologist. I went to see them and explained all my symptoms to her and she did some tests on me. She asked if I had any worries about what it was and I said ‘MS’ as obviously I had googled my symptoms and come up with this!
She said she really didn’t think it was MS as my symptoms and the tests didn’t point to it. She said I could have an MRI scan if I really wanted to but she didn’t think it would show anything up and even if it did they wouldn’t treat me anyway?! So she said to go away and have a think about it..I decided against the scan and the symptoms did go away for about 6 months.
Then back at the start of January, I found out I was pregnant..and at the same time, all my symptoms plus some seemed to come back. I have suffered on and off for anxiety for years but the past few years Ive had it pretty much under control, mainly down to daily exercise..
But the start of pregnancy seemed to bring back all my old anxiety feelings.. so I went back to the Doctors as my old symptoms seemed worse this time round – the pins and needles in the feet, burning sensations in parts of my body, arms ache and feel painful especially when on mobile or reading… my symptoms are generally not too bad in the day but as soon as I lie on the sofa or in bed, parts of my body feel like they are going to sleep, or tingle or go a bit numb feeling.. not to the point I cant feel my body but they feel like they are going to go numb…
Anyway, I was hoping the Doctor would give me some reassurance but instead said to me – It could be MS!! And referred me back to the Neurologist.
So I came out of the Doctors in floods of tears and on the verge of a panic attack. So I managed to get an appointment 3 days later as I have medical care with work..I saw the same Neurologist and again she told me she still doesn’t think Ive got MS. She said the fact that Im pregnant too, means that again if they did an MRI scan (which they don’t like to do in pregnancy) and they did find something, which again she said she didn’t think they would, they wouldn’t treat me anyway..she told me to go away and really try and enjoy my pregnancy and not worry..

Well I tried to do that but I keep getting new symptoms and Its just ruling my life…the scariest one for me now is when Im in bed, I can feel like my face is going to sleep and burning and twitching..it also feels like the corner of my mouth is wet and like I need to keep wiping it.. today it feels like its twitching and cramping..
Last night too I was getting a lot of muscles twitches and had like a spasm in my hand too which really scared me.
I also have some numbness in the tips or my fingers.or pains in my feet…the symptoms seem to change daily.

I just can’t feel reassured that I don’t have MS, I worry about it constantly and am permanently on the look out for new and worse symptoms.. I feel so miserable and this has completely overshadowed being pregnant. I just worry and think how am I going to get through the next 7 months like this..what if something awful is wrong and I can’t look after my baby or I don’t even make it that far!!! Im so scared and just don’t know where to turn…I think there is no point in going back to the Doctors but I just cant believe there is nothing wrong with me..

Sorry for such a long post :-(
Clare

[blueangel]

Hi Clare

My dad died of MS in the 1960s when relatively little was known about it as a disease. As I'm sure you've googled already, there are different types of MS, and the symptoms are variable. However, the big thing you've said that doesn't add up to your problems being MS is "the symptoms seem to change daily".

As MS is about changes in the brain, the symptoms simply don't work like that. Yes, you can get good days and bad days with it, but because it's all about the way the nerve signals are transmitted through the brain, the symptoms don't jump about from place to place.

I've had all the symptoms you describe at some point or other and the great majority of them can be caused by anxiety. Also, don't forget that you're pregnant! This causes a lot of changes in your body because of the demands your baby is making on you and because you're hyperaware of your body, you're picking up on everything.

Try to enjoy your pregnancy and look forward to having a healthy baby.

[Clarep1905]

Thanks BlueAngel…there are some symptoms that, whilst they can come and go – are quite consistant, like the pins and needles in my feet and the arm aches…although sometimes its my left arm, sometimes my right or both…also the pains and slight numbness in my fingers can change hands too..
The thing I cant stop worrying about is that even though my Neurologist doesn’t think I’ve got it..one Doctor did mention MS…I think well why did he even mention it? That’s what got me in such a state and when things started to feel worse… I just cant get my head round the fact that this is just anxiety.
The symptoms I mentioned are just some as well..I wrote a list the other day and it was about an A4 page long!!! Surely there must be something physical causing it?!
And I find it so weird that lying in bed sparks it off…I can be fine and then I go to bed and after about 20 minutes..the pins and needles and strange sensations start…pretty much every night…. I find that when I get up in the morning and exercise I feel better..but I dread going to bed now as Im just waiting for all the sensations to start and they always do :(

We’ve got our 12 week scan next week and my Husband is so excited but I just feel completely flat and feel like what is the point in getting excited?
I just don’t know what to do..Its not even like I can take anything to help with my anxiety! I just have to ride it out…

[emlica]

Did the doctor offer the 'it could be MS' out of the blue, or was it a 'well, it could be' in response to you saying 'I'm worried it might be MS'? Because if the latter, it would be irresponsible of him to completely disregard it without having checks done, really. Plus - the neurologist is the specialist; the GP is not.

[Clarep1905]

No he just offered it out of the blue

I think its because I said I get numbness at night sometimes..Although I'm not sure if it is numbness exactly as I can still feel the part of the body when I touch it..But i guess the word numbness must have triggered his response..
He didn't even offer the thought it may be anxiety.. I think he just wanted to get me in and out as soon as possible as he didn't really ask me any questions..

I know I should listen to my Neurologist because she is the expert but I always focus on any negative! Also I dont think I told her every symptom I get so maybe that would have made a difference to what she thought. She did some neurology tests last year and I was fine with all of them but I think maybe Ive got worse since then.

[Serenity1990]

I've been through this awful headache over the past three months, you have my every sympathy. I've had all the symptoms you describe and more besides, I saw one of the best neurologists in the country out of my own pocket, had an MRI, the lot. Everyone's told me the same thing: nothing I've said not any of the clinical tests suggest the possibility of MS. But it's awful as whilst now I'm pretty much better you will always read stories about it not being detected.

For me, I'm suffering from a post viral inflammatory process coupled with acute anxiety resultant of a doctor wanting to "rule out" a brain tumour for which I needed to wait three weeks (during which I was convinced beyond all doubt that I had one having then googled). I'm not yet able to return to work properly as I'm still quite ill, but when I do manage to distract myself I'm absolutely fine.

I'm no doctor, but all I can say is it doesn't sound like that's what you've got as your symptoms are moving around and in almost all cases a neurologist would pick up clinical signs. There are many, many other perfectly harmless things that cause these symptoms, unfortunately google doesn't tend to come up with these for various reasons. Not least among such issues is anxiety.

[Clarep1905]

Thanks Serenity…So sorry to hear you have been suffering as well, so scary isn’t it?
Wow that’s good that you got to see them… That’s great that you have had all the tests and they are clear.
I’m almost too scared to have an MRI done, Part of me wants to but part of me is petrified as its definite then..

Oh no..see Doctors saying these things really doesn’t help does it? That’s when mine has been worse since…
I know what you mean about google, Ive set myself off into several panic attacks after being on google…

Ah thank you…Well no exactly, you never find the innocent harmless things do you, its always the worse possible scenario!
Thanks for your reply..x

[HealthAnxiety12]

I greatly feared MS when all of this began. I knew without a doubt that I had it and spent a lot of time on MS forums. I have pretty much all of your symptoms and I don't have MS. I even had urinary incontinence (not full bladder, but still) when I was at the height of my MS fear. I can say with confidence that you'll move on to another diagnosis if you get an MRI and it turns out to be normal (I'm pretty certain that it will).

[Clarep1905]

Thanks Haligraphy..That's reassuring.. Well that's the thing, I used to suffer from awful health anxiety but the past few years I've had it pretty much under control. When the Neurologist told me last year I was ok, it satisfied me and the symptoms disappeared for 6 months..But being pregnant seems to have sent my anxiety in to overdrive and I cant seem to think rationally!
I had a couple of times last year where I seemed to be going to to the toilet more often than usual..I went to the Doctor last year and they said it wasn't an infection so put it down to irritable bladder. Also about 7 years ago, i had a viral inner ear infection - Well thats what the Dr said it was..I often have times when the vertigo comes back and I get bad tinnitus. When i last had a bad attack, which was last year, The Dr told me I did have a slight jerky movement in my left eye..Well I also read thats one of the tests they do for MS!! so now Im thinking, maybe it never was an inner ear infection and maybe it was the start of MS and that's why my left eye has a slighty jerky movement...So I'm getting in a state thinking back about these symptoms now...

I'm sure my Neurologist did the test to check for the jerky eye movement and she didnt mention anything..But I cant remember if I saw her before or after the Dr..

The minute I start to feel a bit reassured, my mind whacks me with something else to worry about!

Thanks for your reply though, i'm glad all is ok with you..

[Serenity1990]

You need to try and understand that what makes a neurologist with twelve years of training and many more of experience different from an untrained worrier with google, is that Google gives you a list of symptoms, whereas the list of symptoms is far less important to a neurologist than their presentation. The whole thing about MS is the list of symptoms can be very similar to everything from a virus to benign phenomenon to anxiety to pregnancy, which I suspect is why so many of us end up worrying about it. However the way they present is quite unique: symptoms are localised and occur simultaneously for a significant period of time. A twitch here and a burn there, a tingle here and a bit of numbness there is simply not how it presents. I think is is why we end up thinking it's a possibility but neurologists wouldn't even consider it. As soon as you accept this 100% you'll be well on the road to recovery.

A few little things that I've found useful:

1. Read everything RLR has to say on the matter. He's a retired neurologist who used to post on here and has his own forum. Alas I understand his own health hasn't been great lately so isn't currently posting on either, but he's written lots that should be helpful to you.

2. Don't google your symptoms. If you have to, end the search with site:nomorepanic.co.uk, as this will only bring up results from this site and will prove to you that everything you're experiencing is experienced by other anxiety sufferers.

3. If you can, take some time out, grab a long holiday, see friends you haven't seen in a while, generally give your body a rest. These physical symptoms of anxiety are basically manifesting because your nervous system is exhausted - give it a rest!

4. Vitamin D. I found this gem by browsing the CFS forums having been diagnosed with a post-viral process. Many of the visitors to those forums who are relatively new sufferers of neurological symptoms that nobody can really explain suddenly feel miles better after taking Vitamin D supplements. I started taking them late last week and since the weekend I've felt pretty much back to my old self. There is a bit of research going into unknown benefits of Vitamin D, it seems there is a lot of correlation between these conditions and vitamin D deficiency but a causal relationship is yet to be established. Personally I don't need a causal relationship to be established if it's harmless and inexpensive!

The above is not medical advice, my medical training extends only to an expired first aid certificate. However I've been going through this living hell since December, and I've just had five fantastic symptom free days which last week I would have thought impossible.