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Scared I have MS

(36 Posts)
stoppingbywoods Sat 07-Nov-15 19:26:25

First of all, I posted about this a couple of weeks ago and things have changed since then.

Woke up one morning four weeks ago with numbness all over my left leg between the knee and ankle. No back pain. I saw a neurologist a week ago who said he thought this would probably settle down as my medical exam was basically normal - but he couldn't rule out something more serious. He suggested that an MRI scan would probably be reassuring. They cost £1000 though - a lot of money to us. I'm also afraid of what it might show.

Over the last few days, the pins and needles have spread into my toes and up the thigh. I also feel as if my toes are hot and curled up, but they're not.

A young relative died recently of an illness similar to MS and I'm so frightened. Will someone please tell me what I should do? I can't share this with family members.

(Nancy75 - if you're reading this - I tried to PM you but it wouldn't let me for some reason - sorry and thank you for your message).

AnnaFiveTowns Sat 07-Nov-15 20:43:21

Hi, I had an MS scare twenty years ago and then again 5 years ago so I know how frightening it feels for you. My fears turned out to be unfounded ( kind of, we never did get to the bottom of what it was but MS was ruled out following the second Mri scan.)

Surely it would be better for you to know either way. It may be MS or it could be something else. If it is Ms then there are lots of drugs which can help to slow things down and relieve any symptoms. The sooner you get started, the better. Lots and lots of people with MS continue to live a very full, normal and long life. Some people have the odd episode now and again and are completely normal in between. I have two good friends with MS, they've both had of did 20 + years and they both live normal lives; work part time, look after kids, walk the dog etc.

Are you outside the uk? I'm guessing you are if you must pay. Is there any way of getting the scan done more cheaply because I think it would be better for you to know one way or another.

stoppingbywoods Sat 07-Nov-15 21:06:28

Encouraging to know that Anna thank you. I think there are different types as I know two people who sufferers to be in very different situations from each other.

I'm in the UK but apparently the waiting time for a non-urgent MRI scan is nine months. If this is a period of inflammation that will go away and possibly return, a scan in nine months seems a bit pointless.

stoppingbywoods Sat 07-Nov-15 21:06:57

are sufferers and sorry for typo

MissTriggs Sun 08-Nov-15 22:22:45

iHad an ms scare this year too.,

Fwiw I would
- go back to gp surgery and get copy of neurologist letter to gp
- make gp appointment and report the change in symptoms
- see a physiotherapist

Footle Sun 08-Nov-15 22:45:15

It doesn't sound non-urgent, to this non- medical person.

stoppingbywoods Mon 09-Nov-15 07:55:58

Thank you misstriggs and footle. I have actually done all those things.

Apparently the non-urgent wait time is three months, unless there's something very dramatic like loss of function. Apparently numbness is down to the patient's perception and therefore 'harder to make a case for'.

I'm so anxious.

WicksEnd Mon 09-Nov-15 08:20:25

I had suspected MS a few years ago, general weakness down left hand side, tingling/pins and needles, GP told me for 3 months it was a virus, then one day I couldn't walk in a straight line, I veered to the right every time I tried. Admitted to hospital, suspected MS (spent a whole week in hospital on MS unit) when in fact it was a disc lodged in my spinal cord. Operated the next day and vast majority of feeling returned.
An X-ray might be a cheaper option than an mri to rule out any disc degeneration? At least it would rule it out?
Hope you get sorted soon.

stoppingbywoods Mon 09-Nov-15 09:02:17

That sounds terrifying wick. I'm glad it got sorted out. Actually I've had a few MRIs on my back in connection with Pelvic pain and they have shown a bit of degeneration. But there's no pain and a physio has given it the OK this time. I'm going to see a specialist Pelvic physio just to double check.

MissTriggs Mon 09-Nov-15 18:43:08

Have you been referred for the Mri?

stoppingbywoods Mon 09-Nov-15 19:38:52

No, I haven't. The neurologist hasn't written his letter to the GP yet. So I'm unlikely to be joining the queue for another few weeks. I can't live like this.

lucy101101 Mon 09-Nov-15 19:46:51

Hi there, I have had an MS scare (well several actually) and seen numerous neuros over a thirty year period so I understand how you are feeling. There are many, many different diagnoses and there is also a large percentage of people (like me!) who never get to the bottom of similar symptoms (and who also remain pretty well with very little progression). How about going back to the GP and asking for them to refer you for a second opinion?

stoppingbywoods Mon 09-Nov-15 21:00:56

Thank you for replying Lucy. My husband and some private health coverage that offers a second opinion service and we are in the process of accessing this. Without an MRI scan it might not be terribly helpful - perhaps I should just go ahead and have it privately.

lucy101101 Mon 09-Nov-15 21:34:02

I ended up having one privately... but nothing could be found! I have also had a subsequent one on the NHS a few years further along and again it was clear. As far as I remember a spinal tap is also required, amongst other things, for a positive MS diagnosis. I hope you find out what is wrong.... but if you don't please don't worry. It can take a very long time indeed, or never in many cases, to work out what is wrong. I have honestly wasted so much time worrying. In many ways it has been useful to try and learn to live with the unknown now I have had to accept I maybe never get a diagnosis. I really feel for you as it is very stressful.

stoppingbywoods Tue 10-Nov-15 08:18:07

Thank you Lucy. I'm trying to carry on as usual despite the worry. It's encouraging to know that you went through similar and are still well after so long.

MissTriggs Tue 10-Nov-15 09:28:01

I think 2 nd opinion is a good plan

redpriestandmozart Tue 10-Nov-15 09:30:01

I knew I had MS for nearly 10 years but mainly suffered from head in sand syndrome and wouldn't go to the doctor, you know in case he actually told me what I knew! Anyway in those years I had many symptoms, just like you describe, I won't list them all but what I will say is that I am convinced the worry thinking I had MS compounded every symptom. Once I was officially diagnosed in 2010 I had fewer problems, my body calmed down and while I still had the odd sensation it wasn't nearly as bad.

While the diagnosis wasn't unexpected, it was still a bit of a shock although I did have satisfaction in saying to my DH 'I told you so'. However, with a positive diagnosis I was able to cope much much better, I was in the system, I have been on disease modifying drugs for four years and can lift the phone to my MS nurse any time, I have regular MRI scans and consultant appointments. Friends and family understand and can make allowances when necessary. I am managing very well.

In hindsight it would have been better knowing 10 years ago, I would have had much less stress and worry and would have had DMDs much sooner which is vital for this disease. I know it is worrying for you but MS is not the disease it once was, but without an MRI you won't get answers. An LP can also confirm diagnosis but in many cases it can be confirmed by MRI without the need for one.

I totally understand what you are going through, stress does not help. Keep a diary of symptoms, I have a doc on my laptop and I add everything to it, but I also use an app called Symtrac which I wish I had 10 years ago.

I hope you get sorted quickly, I don't mean to suggest you have MS, this is just my experience I knew I had MS for nearly 10 years but mainly suffered from head in sand syndrome and wouldn't go to the doctor, you know in case he actually told me what I knew! Anyway in those years I had many symptoms, just like you describe, I won't list them all but what I will say is that I am convinced the worry thinking I had MS compounded every symptom. Once I was officially diagnosed in 2010 I had fewer problems, my body calmed down and while I still had the odd sensation it wasn't nearly as bad.

While the diagnosis wasn't unexpected, it was still a bit of a shock although I did have satisfaction in saying to my DH 'I told you so'. However, with a positive diagnosis I was able to cope much much better, I was in the system, I have been on disease modifying drugs for four years and can lift the phone to my MS nurse any time, I have regular MRI scans and consultant appointments. I am manage very well.

I would suggest keeping a symptom diary to show your Dr and Neuro, I use an app called Symtrac which is excellent at tracking every detail.

I hope you get all sorted really soon, I am not suggesting you do have MS this is just my story

flowers

Draylon Tue 10-Nov-15 12:46:04

What * red* says.

Be aware that you can have quite dramatic MS symptoms yet have nothing show in an MRI scan; and vice versa- you sometimes 'find' the tell-tale plaques on an unrelated MRI scan, but the patient isn't aware of any symptoms, so having the MRI scan may not be helpful, so don't pin too much on it.

You would also need a LP, in search of protein bands, I believe; however, I think MS is often a diagnosis made symptomatically in the absence of any clear diagnostic signs.

I was diagnosed with 'Benign Sensory MS' about 20 years ago with a negative MRI and LP. I had had vague symptoms for ages, culminating in a few very low grade motor symptoms (little fingers getting in the way when writing etc) I know I am very lucky in that I am on no medication, and have been symptom-free, more or less, for years, just numb patches around my body.

But even so, 'proper' MS doesn't have to be a death sentence- see what red says! And be aware what you've described may not be MS at all!

Nicegreenhandbag Tue 10-Nov-15 12:58:00

I was diagnosed earlier this summer and it does take time as everyone needs to be certain.
I went to my GP with symptoms similar to yours and she sent me to hospital for an urgent assessment which turned out to be a week stay in hospital and Steroid treatment. This then got me into the 'system' and I've seen a neurologist and finally have access to the MS nurse who is the best help for me.
Trouble is that MS is so specialised and GPs can't say you might have it as it could be lots of other things. I can only suggest badgering all of the GPs you have access to for an urgent referral.
Wish you all the best!

nancy75 Tue 10-Nov-15 13:14:16

stoppingbythewoods I'm glad I've seen your update and sorry that you are no further on than before.
I can understand how frustrating and frightening it is having to wait months for a scan. When I was diagnosed with TM i couldn't see a gp and ended up going to A&E (sent by NHS Direct who made me think i was about to die)

If you can somehow get on to the hospital 'system' things seem to happen much faster (i had 2 MRI's and had seen a neurologist within 4 weeks of first going to hospital)

I know this is not how things are supposed to be but if you have any changes in symptoms/new symptoms I would go straight to A&E instead of your doctor.

I want to reiterate what others have already said - my symptoms were very much like yours but on both legs and up to my waist, I was terrified - 6 months on I have funny tingly feet sometimes but I'm generally ok. The fear is quite often much worse than whatever it turns out is wrong.
flowers

MountainDweller Tue 10-Nov-15 13:16:06

If you have access to private healthcare they will probably send you for an MRI anyway, so I would try for a private doctor appointment before you pay for an MRI. Some insurers will let you self refer to specialists - if this is the case you could go straight to a neurologist without seeing another GP first. Good luck.

redpriestandmozart Tue 10-Nov-15 13:25:53

Sorry for my muddled post!

Nicegreenhandbag Tue 10-Nov-15 14:33:22

Can I echo what Nancy said? Go to A and E? I didn't want to say it, what with the struggling NHS and all but actually MS needs attention. It's manageable but I've been off work for months with my relapse (basically fatigue) but it is very disruptive to your life and your family's too.

MissTriggs Tue 10-Nov-15 16:27:48

How are the toes now?

stoppingbywoods Tue 10-Nov-15 20:05:55

Thanks for the replies flowers I can't tell you what it means to me at the moment - all the helpful information and reassuring advice/concern.

Having also now read this thread (!), my DH is firmly in favour of paying for a private MRI scan. It does represent a month's hard savings for us but after reading here about the importance of getting treatment early, we can't justify not going ahead with it.

mrst No change on the toes, thanks for asking.

red, nice, nancy and dray - I've taken everything you've said to heart.

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