I just need to know.

Everyday living
1

Hi everyone.

Im 63 years old ( but don’t , or rather, didn’t, feel it!)

Out of the blue I find myself in such a frightening situation. For a while I’ve not felt right and kept forgetting things and in the summer I had weird sensations in my ear like crackling paper, and then the same feeling in my right lung. My zest for life has gone too despite being on a low dose antidepressant.

Suddenly, at the beginning of December, I was jolted awake by a numb burning feeling in my right knee/thigh. Every night this seemed to spread and included numbness in my right jaw, arm, hand…in fact all the right side. Then my lower spine started the same and I’ve now got a uti …I’ve found it difficult to go to the loo in the night.

I had an MRI early January and my spine has no lesions but there are white spots/ patches in my brain. I’m now waiting to see a neurologist.

The night times are the worst and my legs have started to go in tight spasms too.

Am I not too old to suddenly start with ms? Also why are most of my problems at night?

In the day time my legs feel heavy and ungainly but the burning, crawling isn’t so bad.

Any thoughts would be greatly appreciated. Many thanks .

2

Hi Cathy

I’m so sorry this is happening to you. How frightening.

Unfortunately, there are many things that could have caused your symptoms. So no one on the MS forum can tell you it’s MS or that it’s not. It’s a sad truth that you’ll have to wait for the neurologist to read your MRI scan and take your history, also maybe do a physical exam and take other tests.

Who has referred you to the neuro? Have you checked that the referral has actually gone and the name of the neurologist? Assuming you know to whom you’ve been referred, you can phone the admissions team and see how long the wait is likely to be. You’d be surprised how often phoning admissions and being nice gets you shifted up the queue.

Best of luck with it. Try not to get too stressed, that won’t help whatever is actually going wrong with your body.

Sue

3

hi cathy

the right age to get ms? apart from never, there are no hard and fast rules with it.

i was diagnosed the week before my 50th birthday.

i counted myself as lucky to have had 50 years of rude health and good times.

actually i think i have had it for longer as i remember strange episodes going back to being 12 yrs old.

the heavy legs and the zombie walk i understand as i have those too.

i also have burning feet at night.

amitriptyline seems to damp the crawling and burning down a little but doesn’t get rid of it completely.

i have a cooling spray for when it’s unbearable “magicool” off t’internet.

baclofen is usually prescribed for spasms but it makes me legs go like jelly so i rarely take it.

magnesium is excellent though, i have a spray which i keep beside my bed so if it wakes me i can have a quick spray and rub it in. (holland and barrett)

good luck with your neurology appointment

carole x

4

Thank you ladies for your replies.

What a stupid name I’ve chosen…it was the middle of the night when I joined. So negative, I’m sorry.

Yes, re my age, no time is a good time and for young people it must be so much more difficult.

I think I’m frightened as its escalating rather quickly so I don’t feel in control of my body. I’ve lost confidence in it.

I’ve seen my gp so far and he had sent me for a brain and spinal scan. He now says he referring me to Hull neurology dept.

16-18 weeks? Nooooooo I can’t wait that long.

i have some amitriptyline but even the lowest dose causes terrible restless legs.

if I were to see a consultant privately, do you know if you can swap to nhs for treatment?

Are white lesions in the brain a good indicator of ms? I guess the next test is a spinal tap.

i feel so panicked by all of this. It won’t suddenly stop my breathing will it…or lose my sight?

Im so scared.

5

Hi Cathy

I’m sorry that you are having such a hard time.

Im new to MS and dont have the knowledge to add to what has been said above.

What I can say is that Im pretty sure that you can get a diagnosis etc from private consultant and then switch to the NHS for treatment if it turns out that u have something which requires treatment. Its just a pitty that the NHS is now so slow that many of us have to do this.

best wishes

Ruprt

6

hi cathy

it seems to be the case that if you see a private neurologist, he/she will transfer you to his/her NHS caseload.

however as you already have an nhs appointment, it could just cause confusion in the system.

your urinary tract infection may be because you are retaining urine.

a bladder nurse can scan your bladder to see if this is the case.

you can self refer to the bladder and bowel clinic.

it is a worthwhile place to go.

i’m amazed by the number of friends my age, without ms, who have bladder problems.

good luck

carole x

ps as for user names mine used to be pigpen!

7

Hi Cathy. I’m 64 and a half (sounding like Adrian Mole here). I got my confirmed dx two years ago. I have health insurance so started the ‘road-to-MS-diagnosis’ in October 2014. I noticed that I had weird symptoms and felt I ought to sort out what they were as - I remember thinking - 'it won’t be much fun having these strange events in ten years time and there’ll be worse consequences then '.

It took almost three months for all the tests to be done (positive for all) and the neuro said from the outset that he suspected RRMS and thought that I probably had this from 1997, where I had a lot of problems which were dxd by a rheumatologist as fibromyalgia. I didn’t know what fibro was at that time, then I found out, but the symptoms mostly went away so I didn’t think about it. Everything went quiet after that but I was having random falls, about three times a year. When the dx was officially confirmed I went into the NHS system under the same neuro. It is definitely possible to do this. Only get to see him about once to twice a year though. He was keen to get me on a DMT as soon as possible and I’ve been on Tecfidera since about March 2015.

So that’s my back story and I hope it’ll help in some way. But of course you may not have MS. In any case I hope you get your dx of whatever it is very soon. I think that if you’re staying in the NHS system you need to be very proactive - maybe your GP can move things along with the referral - i.e. get you an urgent referral.

Oh, and regarding bladders I’m a patient at a wonderful bladder clinic and was before my dx. The wonderful Prof who heads the clinic said that bladder problems in MS are extremely common and I’m on long-term antibiotics.

Carole, when I first started coming on here I used to see the Pigpen postings (and even dreamt about them one night!). I often wondered where this Pigpen person had gone!

Louise x

8

hi louise

i never vanished off the face of the earth.

i left this forum and facebook for a couple of months due to computer being hacked.

now everything seems to be ok.

pigpen was my cat, he was a long haired cat but as a kitten he looked like a ball of scribble.

hence the name which was a character from the peanuts cartoon.

i had booked him in to be neutered but had really bad flu, so cancelled.

unfortunately he sneaked outside and got run over.

i still miss him like mad.

carole/pigpen x

9

Hi Cathy

I seem to remember that you can get your user name changed. Try sending a message to Oliver (admin) and see if he can help. User names should never be chosen in the dead of night. That’s when you are likely to choose the most random or the most downbeat name. Hopefully you can change it to something more appropriate. But if not, then we’ll all try like mad to ignore the ‘scared’ part of your name. And of course there’s nothing wrong with being scared by the thought of MS. We all of us are / have been / will be again.

Sue

10

So sorry for your loss, Carole. I never imagined that he was a cat. Not that would make you miss him any less…

Louise x

11

I’m really interested in the ‘why at night’ thing. In my case, I had assumed it was because lying down pushes the top of my cervical spine and irritates the lesion. But if it happens to people with no cervical lesions, then why?

12

Hi Cathy I know all about waiting times on the NHS! Because my initial problems were about balance I was initially referred to an ENT clinic - waiting time in our area 3-6months! When I contacted appointments and said I couldn’t believe it they as good as laughed! Ended up going privately and after being diagnosed have now been slotted into the same consultants NHS clinics. Have to be careful what I say about NHS because my brothers a nurse! but I’ve found you have to fight for every thing to actually get what you want. Also realised you have to make sure you read up before you go so you know what to ask

13

Hi Cathy,

MS is a very complex disease to diagnose and nobody has the ability (or the right) to do that on a Forum.

However, there are a couple of things that may help that can’t do any harm.

Some people find a magnesium supplement brings relief from spasms and stiffness. It comes in tablet and spray-on forms.

It’s easy to keep the home too warm in this weather; so keeping cool, especially at night, can help.

These are only the things that help me personally, others here may have other tips. I hope that you can get some relief from your symptoms soon.

John

14

Yes, if you go privately you will be able to get an appointment with a neurologist in about 2 weeks. That could cost around £250. That neuro will more than likely take you onto their NHS list at whichever hospital. This may speed up treatment time, access to MSNurse etc. or it may not. It may reassure you, or it may give you yet more questions. It may just make you feel a bit more in control right now.

However, if you do, the consultant will want to see your actual scans, not just the report. Interpreting MRIs is quite an art form, so you will either need to get copies now (patient access at whichever hospital you had them done will be able to advise) or try to get the hospital to send them to the private hospital, this latter option involves all sorts of phone calls to secretaries etc in my experience and can mean they don’t actually arrive so you essentially have a pointless consult and waste your money, better to wait a little longer for the private consult and ensure those scans are there.

The advantage of going privately for one consult is that you can choose your neuro and you will most likely stay with that neuro when you go back over to the NHS. It is worth having a look around to see what choice you have in your area and then maybe asking people to message you with recommendations. You want someone you are going to get on with, communication and mutual respect are really important.

As regards the lumbar puncture: if your MRI scans are conclusive, they are unlikely to do it. If they think you have just had one episode and they aren’t sure, they’ll give you the choice whether to have one or not (there’s an awful lot of choosing and deciding with MS) I did have the LP, and it was absolutely fine. Less uncomfortable than a routine dental check for me.

Finally, I’d been on amitryp for a long time (for other things) when things went wrong last April. I had a horrible year with constantly changing symptoms and a lot of pain and discomfort, but found that pregablin helps. There’s also gabapentin. Once again, it’s a bit of a personal choice and down to trial and error to find what works for you. My relationship with my GP has changed a lot, I seem to know more about this than she does, so we kind of work together. Don’t be afraid of going and asking to try something or saying something isn’t working for you.

This is a very scary time, I know. Sometimes you think you will never be able to relax without fears jumping out at you or worrying about the future, but you will. As one of the wise women in this thread told me last year (sorry ladies, I can’t remember which of you it was!) you are on a rollercoaster right now, you just have to go with it. I became ill in April, MRI in June, LP in July, results of LP in August, changed neuro to MS specialist in October when I got dx, more MRIs in December to determine how active it was, saw MS specialist again at beg of Jan and will have appt with MSNurse for bloods prior to starting DMT on Feb 14th. You just can’t keep up the being scared all that time, real life starts creeping in and the new normal gradually emerges and you find yourself laughing again. But whatever, we’re here.

Wow! an essay! Sorry everybody.

15

My symptoms are only really at night and I don’t have any spine lesions visible on MRI. My neurologist says it’s because I am hotter at night although I did explain that we sleep with a 4.5 tog duvet so I’m not overly hot at night.

16

I suspect it is another of the great MySteries then!

17

Again, my very grateful thanks for the replies. I had a terrible night last night. I find I can only sleep for an hour at the most before the burning numbness wakes me and then when it try to get up my legs and lower arms go into tight spasms.

Im also freezing cold, so wrapped some towels around my legs to warm the muscles up.

My main fear in the night was the the tight tingling chest and I felt quite breathless. I’m so terrified I’m not going to be able to breather?

This feeling cold is so alien to me as for the past nine years I have had horrendous hot flushes both night and day.

From what I gather an MRI alone cannot diagnose ms? Apparently most people do get white patches as they get older?

Sorry for all the questions…you’ve been so patient with me, despite your own respective worries and concerns.

Thank you so, so much.

Catherine.

18

There are criteria to dx MS, basically the multiple bit means they want to know of at least two distinct episodes. However, there are some characteristics which a Neuro might see in a scan which would be typical of MS and I believe people can be dx on just one scan, especially if they’ve had a past history of optic neuritis. Some people, like me, have the history but not the typical scan but do have a positive LP and so get the dx. It can be very complex. This is why no one but a Neuro can diagnose you. It takes skill and experience and there are so many different neurological conditions

19

There is medication you can try for your symptoms even without a formal diagnosis. Only a neurologist can diagnose MS and they use the McDonald criteria. It’s quite difficult to diagnose and other causes need to be ruled out too.

20

Okay…all these things are really helpful. Thanks.

Before I give you a break, I just need to ask, my dr ‘allowed’ me a week’s supply of zopiclone . After such a horrendous previous night I rather terrifiedly took one last night…and…I slept! Hurrah!!!

Ok I woke a few times and stumbled to the loo, but I could get back to sleep. This morning my mood is much brighter and I feel rested at last . My body feels stiff and numb but I can cope with it because I got a better nights sleep!!!

Now my concerns… I’ve read there’s a link with ms and zopiclone? But can’t now find the details.

My gp will be hugely against prescribing these I know…but what price do you pay for a nights rest?

Any thoughts/experiences on zopiclone please? Many thanks.