My doctor said 6 months is too long to wait amd he said he will try amd get me my neorolagist referrel faster . I will know more next week. They have just seen my mri results I had thw results a few days ago x
Hi there my doctor said 6 months is too long to wait so he will try amd hurry things up amd see how long I will have to wait under a urgent referral . Il know more next week x
Good, I’m very pleased for you. I hope the appointment comes through soon.
Sue
Hi there I spoke to my doctor again today he said he will ring the neorolagist to see how quick they can get things going. He juat explained abit more about my mri . How there’s no damage on the optic nerve like they forst thought they would find there’s patches on the brain more then what they would expect with someone my age and more on the left then the right . I told him a hour how bad my head pressure is and he didn’t know what to say about that and how unwell I feel and I’m struggling. He just said once I’m completely off steriods tablets I should feel better and then get the right treatment for whats going on. Iv been lying down all morning feeling very tired as don’t sleep well. Going to get up now and try pop out fpr abit . Thank you for your messages xx
Hi Charallen89:
On ‘head pressure’ - I’ve had it many, many times. It felt like my brains were going to pop out of my ears. I was
really burning up too and went bright red - awful for 10 days - and then it improved slowly with steroids, pain meds and lots of
rest.
It is good you are still able to go out and about. Steroids do make you a bit hyper. Do try to rest though. I had sleeping pills
to counter act the effect of the steroids so I could sleep at night.
Thinking of you - hope you get to see a neuro soon, although I don’t think they will say anything diffent from the
advice given on the MS Trust website or on NICE. It’s falls or infections you have to watch out for - especially if you
are taking steroids - they close down your immune system - so keep away from anyone with a cold this winter.
The doctors always say to me: “Your body will heal with time. Give it 3 months.”
I hope you have help at home.
Best wishes.
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Thank you for your message . Head thw head pressure not nice in have to rest my head most time it spins me out when it’s like it. The doctor said the steriods can make you feel rubbish sometimes . Il try to avoid anyone with bugs. Il have to try build my immune system back up after. My husband has been at home since this started but he has to go back to work next week which I’m worried about so I might have to try sort out some help with school runs just incase I need it. Hopefully I hear some more new on my referral next week. Il let you know what happens Thanks again Charlene xx
REST - GO TO BED AND WATCH TV OR READ IF YOUR EYES ARE OKAY
AVOID A FALL
Yes, just REST and get some help with driving.
ALSO…
You will need to inform the DVLA anyway - if you have MS - and check with your GP when you will be fit to drive.
You might find the steroids are depleting your potassium levels, making
you feel weak and awful, try eating food rich in potassium - like beans and baked potatoes and their jackets.
See NHS list Vitamins and minerals - Others - NHS
If you are returning to work - there is Access to Work, which can pay for taxis etc.,.
I’m so glad I joined this site having you message me helps 
. … I don’t drive the school.is a two minute walk. I started my driving lessons a month before this all started and I was doing well considering my confidence never been that great and that was helping but thwn this started :-/ so iv taken a step back until I know I feel well anough and my driving instructor says all my paid lessons are safe until I’m better. But I will inform anyone I need to when it’s all clearer :-). Ok il try more foods like that :-). I come to bed when the girls are sleep early and just read or watch TV and I try to in the day if I feel really bad until I feel ok to get up. Three more days on steriods then that’s it . Hope your doing welland thank you xx
‘Feeling emotional’ - section here has some helpful tips. Steroids can upset your mental health i.e.,. emotions and sleep.
Also neurologist like to see two MS relapses before they diagnose MS along with MRI, lumber puncture and evoked potentials tests.
So at the moment the neurologist will probably say you have had a CIS (Clinically Isolated Syndrome)
When I had my first relapse they said it was a CIS - then 6 months later I had another relapse and got the RRMS diagnosis and started on the DMDs.
So a long process.
So even though my mri showed quite abit in different areas of demyelination is there a chance that I might not get any more I no its likely I will but is there a chance still ? My first lot of symptoms were double vision thwn couldn’t feel hot or cold on right sode that cleared up then a week after my right eye vision started to go amd started to feel really unwell then went on steriods . Whatever is going on I can’t shake it off very easily :-/ I think when I do see a neorolagist they will be able to explain whats going on more . It seems to be a long process. Have you had a lumber punchure? What is that like to have done? Xxx
I had no problem with the lumber puncture - they just put a thin needle into my spin and drain some spinal fluid.
It’s took about 10 mins. I rested for an hour and went home. Some folk have a headache, but I didn’t. I was fine.
I know it’s a bloody awful psychological waiting game to find out. But stay optimistic.
You are just at Day Three of steroids - so it is early days. In a few months you should have recovered.
I recovered well at first - near normal. But after 4 years I gave up working due to symptoms and fatigue. I was
having two relapses per year - very seasonal.
Ok that doesn’t sound too bad. I’m nearly finished steriods. I had thw three lots in hospital through a drip then put one tablets started from 8 a day then lowered . Got two more days having one then that’s it. I’m not feeling too bad at the moment but I don’t want to jynx it :-). When you have relapses do you get the same each time? Xx
My timeline - everyone is different of course:
I’m 57yrs. 20+ years of RRMS. Now 5 yrs of SPMS.
I only had optic neuritis once - thanks! Once was enough!
Back of my head - twice.
Head - all over - many times.
Neck and spine many, many more times.
So more spinal. But you never know - so random.
So, a very slow, gradual decline over 25 years.
Watch out for falls and infections though.
Oh I see. Can you still move around ok? Il try to watch out for bugs etc but having children might make it abit tricky :-/ . My husband will have to clear away any sick :-). I should have more information this week on how long I have to wait fingers crossed not too long. Xx
I have two children - both grown up now - 32yrs and 26yrs.
I moved to a bungalow - so life is much easier.
Yes, I can move. I use a zimmer frame and can transfer from my bed to my armchair, or to my powerchair at home.
I had help from an OT to make the house easier, and safe for me to move around.
I have a bathlift and ramps, and grab rails etc.,. All that stuff.
So when I am home alone, I can move around the house or go into the garden.
I got the powerchair, because I had a number of falls when home alone.
I have had a slow decline - which I have adapted to.
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Is that all because of the ms? That’s good that you have help with it all so it’s easier to do things amd get move around. Amd being in a bungalow is good xxx
“Is that all because of the ms?” YES!
If you do get diagnosed with RRMS, it might be worth thinking about a bungalow, for the long-term.
Ok thank you for your support and advice xxx
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Take care, and keep us updated on your progress with the neurology department.
Hi Shelly , make a timeline of ur symptoms as best u can and hand it over to the neuro. That will really help because its not just the symptoms but also when they occur thats really important. Best wishes xx. Oh also find out famipy history if u don’t know they always ask that.
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