Should I be worried about MS?

[spam72]

Hi!  I am a 36 yr old woman who has been having a problem with pins and needles in both legs.  The sensations are restricted to below the knee and at the front of both legs.  I started having this in September 2007 and eventually ended up seeing my doctor about it. The sensations aren't there all the time, I seem to have them for a couple of weeks or more and then they vanish. My doc ran some blood tests and discovered that I had a low iron count, he said that this would be what was what was causing the pins and needles.  The low iron count, after lots of tablets, took almost a year to resolve - but now my iron is up to 16 and absolutely fine, apparently (these tests were taken very late in December 08).  The pins and needles however returned just a few days ago and I noticed that they feel worse - more of a sensation of electric shocks rather than the previous tingling.  I have been my own worst enemy and have looked up the possible diagnoses on the web and am becoming more convinced by the day that I have MS.   I also have some blurring of my vision (although I do read a lot as I am a full-time student) and occasional problems with swallowing, as though my throat goes into a series of  mild spasms for no reason (as I'm not even eating or drinking at the time).  I can even hear it making a weird gurgling noise as it happens, so I know it's not my imagination.  Another thing is that I very occasionally (say twice a year) wake up and have a red flashing in my vision, it's as though someone is turning a red light on and off continually.  I have had a full eye test and retina pics but there is nothing wrong and I was told that it was probably nothing as nobody had heard of it before.  I also sometimes wake up in the night with horribly restless legs, it feels like I need to keep moving them and it drives me crazy. Am I wrong to be grouping all of these symptoms together and making my own diagnosis?  I feel like a hypochondriac to be honest and am a little uncomfortable asking my doc if I could have MS.  I have a history of anxiety and I think this tends to get the blame for everything.  But, obviously without running the necessary tests, could I be wasting my doctor's time - could the symptoms I've described be MS?  Sorry for the long post but thank you for listening.

[spam72]

One neuro for the whole of Surrey?!  That's ridiculous!  Can't blame  you for going to the other hospital, 'seems the only sensible option all things considered.

Hmm..so much for 'urgent' too if you're experiencing at least a two week wait.  Do they not take anybody's anxiety into account?  I know there's limited money but maybe they could spend a little less on NHS counselling services if they'd stop messing around with everyone's heads with this waiting lark?  Imagine how many people are suffering from severe stress through not knowing if scary symptoms are real, imagined, or ranging from harmless through to fatal.  Sorry, I'll stop moaning now.  I guess I'm just stressed from perpetually fretting about and analysing my every ache, pain, slight twitch at the moment.  

Anyway, 'hope you get your appointment very soon!  
Take care,
Pamela  

[uk2]

Hi i am in UK on second neuro 2 years later as having a real bad time first tests done 2 years ago on a low strength MRI and i still suffer so this time going out of area to london st georges best neuro hospital ever got 60 neuros there all specialise in different things down this area there is one neuro for the whole of surrey and thats a big area!! so you can imagine how pushed he was so refused to go back to him.

anyway i found good and bad in the NHS but they really are lost in the treating of fibromyalgia or MS it seems compared to the americans i wish i had the money to go private i've got an urgent an appointment and 2 weeks later still waiting!!

sam

[spam72]

Yeah - gotta agree about the going private stuff too.  It is a shame to feel the need to bypass the NHS - but what choice do we have when dealing with our lives / the lives of our loved ones?  

I can't believe how much you've been messed around with the results to your MRIs, 'seems unbelievable and is hardly confidence inspiring.  I also felt sorry about your LP experience - sounds pretty awful for you to have passed out!  

I am full of dread about having this done (if I actually have to).  Having said that I am scared, I really don't know an awful deal about the procedure - apart from the fact that it can be unpleasant and give you a bad headache?  Anyway, I hope that this goes well for you - if you haven't already had it again?  I hope too that you get the results you want, with as little trauma as possible.

Pamela

[Suzie9]

Yes, the NHS is generally brilliant but with limited money there are bound to be problems. I had a terrible few years experience with them. I spent months been told something had come up on an MRI over the phone, no one would tell me what and had repeat MRI of brain and spine with no idea why they were doing it. Took ages to get to see a neurologist. I had to get my doctor to write to people doing my scan to find out what they were looking at. I thought cancer as at the same time I had a lump, and as I said I am a worrier.

Was told once I had more lesions after my 3rd scan, when I did not. Turned up for a 2nd LP (first one I passed out during so was not completed), and they had cancelled it without informing me. Got another one next week. Not looking forward to that!

Anyway, that's enough moaning. But if I had the money, I'm afraid I would go private. I have a friend with RRMS who got his diagnosis quicker by going private, due to repeat MRI scans showing change. He would not have had these on the NHS.

Good luck with your investigations. Let us know how it all goes.

Aimee.

[spam72]

I'm not surprised you find this situation weird!  I thought the whole idea (from the relatively little I've read on this) was that the meds. stopped people's MS from developing further?  Surely to wait for it to worsen is kind of defeating the object?  Or is it just me...And how the heck are they going to know if you don't get MRIs either?  I'm sorry - I realise that my words aren't being tremendously comforting, but it's just that I can see all your points and find the whole situation astonishing!

I hate to think of this all being down to funding, although I suppose this would be naive to think of it as any other.  What an awful thing though!  Anyway, I'm not gonna NHS bash as I've received some excellent care in the past (had a terrible car smash when I was 14- but, with lots of help, managed to recover fully).  Having said this, I've also received some shoddy care too (have one or two minor heart problems which, although simple, took an age to diagnose and caused me lots of worry inbetween).  The problem with doctors and me is that they know I suffer from anxiety and tend to put everything down to that.  It was the same until I got an actual diagnosis for my heart.  It's so frustrating.

Anyway, thank you for your comments and also the info. re new treatment.  I will look that up, thanks.

Pamela

[Suzie9]

I get a little worried about the medication situation in the UK. All the research seems to point to me being on meds now but I don't think they are available on the NHS for people with CIS. My Neuro says I would have to have 9 lesions or more to qualify and I do not think that she subscribes to the theory of meds delaying progression into clinical MS. I won't be having repeat MRI's either, which seems weird as I might get more lesions and they would not know, therefore meaning I should be on meds. NHS again and funding I think.

So its the waiting game with me, which does not suit my character at all as I like to feel I'm been dealt with, at least in some way, not just waiting for another attack.

But, despite my lesions and being at high risk for developing MS because of them, I am now 2 years since my first episode and only sensory symptoms so I try and keep positive. Also, look up this new treatment in phase 3. On the UK MS society website. Things like that make me feel a little better. Medicine is moving forward all the time. But will it be available on the NHS? Hope so.

Aimee.

[spam72]

Thank you Lulu,

it's always good to know what, if necessary, to guard against.  Thanks for the advice.

Take care,
Pamela

[Lulu54]

Pam and Suzie,
Be wary of any diagnosis that downplays that you have MS.  It appears that in the UK it has become the thing to label people with "benign" or "mild" MS and not prescribe the DMD's to alter the course of the disease.  There is no way of knowing if MS will turn out kindly or wreak havoc on our bodies.

I'm glad you have connected with each other and can share your experiences!

My best,
Lulu

[spam72]

Oh yes - and I'm from the U.K. too (Leicester)

[spam72]

Thank you for all your comments.  Today I took the 'bull by the horns' and actually went to see my G.P.  He said similar things to you, as in it could be something, it could be nothing.  I was pleased however that he took me seriously and has referred me to a neurologist to get this checked out.  He even gave me a sheet with the clinic number on and told me to ring and organise myself an appointment.  I did this and was quite surprised to be able to get in in the middle of next month.  I am both relieved to be getting this investigated further (yes, you are completely correct - I am a worrier!) and also anxious because of the potential seriousness of the situation.  I guess I'll just have to discipline myself to sit tight and try not to worry (too) much - easier said than done...

It is interesting to hear your own diagnosis - but of course I hope that your particular condition doesn't develop into clinical MS.  I had absolutely no idea that there were so many different types of MS, or 'near-MS' conditions (for want of a better phrase), or conditions which mimic MS for that matter!  I can hardly believe how many people have these conditions and how much suffering they cause.  I guess people accept and adapt over time, but I guess for me, in my current state of self pity and over-thinking, this all seems terrible.  

Anyway, thanks again for your advice, it's very much appreciated!  

Pamela x

[Suzie9]

I have felt like you in the past and you end up analyzing every sensation you have and perhaps sometimes have some things which are self induced. However, you should get checked out as not all things can be in your head. As for the question could it be MS, well yes some of those symptoms are apparent in some people with MS but it is just if not more likely to be nothing or something less serious than MS.

Write down your symptoms and take them to your Doctor. I don't know where you are from but I'm in the UK and don't think you would have too much trouble persuading them to give you an MRI. I was taken seriously at first where others might have been told to go away and come back later, because I am a professional musician and my symptoms first appeared in my spine. They thought artheritis at first but I am now diagnosed with Clinically isolated Syndrome, ( first episode of MS which may or may not develop into clinical MS). As you sound like a worrier, like me! I would not let them send you away until you at least have some tests, just so as you can feel more relaxed that something is being done.

Keep us informed, and try not to worry too much!

Aimee.x