Jump to content
The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
Happymama

Relapse

36 posts in this topic Last Reply

Recommended Posts

Balanced
Happymama

Hi all.

 

To continue my undiagnosed journey with MS, I have developed tinnitus, thankfully without the attendant vertigo or dizziness (as yet).  Also bladder issues FINALLY raise their head - went to the loo after an urgent message to go, widdled a tiny bit, half an hour later, went again after the urgent message, and finished the job.  Both new, plus electric shocks in new places.  GP advises that unless my legs give in the middle of the high street in town, I've no chance of seeing a neurologist for the foreseeable future, but to ring up if I get muscles spasms that cripple me again, he will prescribe me something to help, off ticket.  This is what GPs' are driven to do now, to look after us properly - break the law.  

 

On the upside, I've started college, as a therapeutic councillor, and when I graduate there'll probably be one in every food bank and GP surgery - the former for the public and the latter for the staff.  

Share this post


Link to post
Procrastinating
Stumbler

Hi @Happymama ,

 

As you're presently undiagnosed, are you still on a Neuro's books to monitor you from time to time, say annually?

 

In the absence of a Neuro, you're going to have to rely on your GP for any neurological symptom management, as you seem to be doing.

 

GPs can prescribe anticholigenerics to relax your bladder, as well as muscle relaxants to address spasms. So, keep talking to them.

 

But also maintain a symptom diary, so that you can  update the Neuro, whenever you get to see them :-

Symptom Diary Details

 

Good luck with your college course.

 

:moonieman:


Edited by Stumbler

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Had an odd symptom.  Woke at four am, and was lying there on my side, looking at the bookcase, waiting for sleep. A dark bloom spread from one side of my right eye to the other like a cloud, then retreated. Then did it again.  If I closed my eyes, it was in negative.  This went on (rather entertainingly) for about 15 mins, then stopped. Then started on the other side and did the same thing.  You can see through this at it's outer reaches but not the deep inner bit.  

 

Very odd indeed

 

Thanks Stumbler but bladder now to normal, and I do keep a symptom diary, I keep a diary and odd ones go in there, as well as on here, lol..  

 

No day is different.  This I love.  

Share this post


Link to post
Procrastinating
Stumbler

I can't really trust anything that happens in the middle of the night, @Happymama. You don't really know whether you're dreaming or not.

 

I know our brains have gone a bit haywire, but it's still a very powerful organ, capable of all manner of tricks.

 

Keep a note of it though.

 

How was your vision in the morning?

 

:moonieman:


Edited by Stumbler

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Fine.  To be honest, I'd love to get optical neuritis, might mean someone takes notice of my symptoms.  I get flashes in the corner of my eyes, too, the outer corners.  Muscle spasms, trying to take hold but I fight them if I can and sometimes head them off.  It's a relapse and I'm six weeks in, or around there.  

Share this post


Link to post
Procrastinating
Stumbler

@Happymama , are you still on a Neuro's books and see them at all?

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Hi stumbler, no.

 

Hitiris the neuro would not see me.  Said I'd canx the visit and  six months after I received the letter and went for the appt I found this out.  He'd canx the visit the day the appointment letter date had on it.  I was in tears. Rang the GP was in tears to her, she said he'd said I was not bad enough, she'd find me a different one and then Covid struck.  

 

So here I am.  Need to ring the GP but I'm sure there are people more needy.

Share this post


Link to post
Procrastinating
Stumbler

You're needy, @Happymama . Chase up the GP to find out why the referral hasn't been made yet!

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Stumbler, I can't get the GP to answer the phone - it just rings out.  You have to go and bang on the desk, and I'm so fed up with things I might say something I shouldn't.  

 

 


Edited by Happymama

Share this post


Link to post
Procrastinating
Stumbler

@Happymama , see if your GP uses "E_Consult". It's an online questionnaire and you should get a response by the next day.

 

Alternatively, call your local MS Nurse. I know you probably don't have one yet, but you can find their details on the link I'll provide below.

 

Explain the situation and see if they'll assist. They might be able to refer you straight to the Neuro, whose ear they have.

 

WWW.MSTRUST.ORG.UK

Use our map to search for MS services such as MS nurses, treatment centres as well as therapists and rehabilitation services near you.

 

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Back with the same issues from December 22, left glute, quads at the top, groin and the bit in the middle, 25 Jan giving spasms, pain and weakness (the glute the latter, my leg shakes a lot if I'm carrying the laundry basket down the stairs. I have to go up the stairs on all fours, to take the pressure off my left leg, but coming down is better.  Now it's March 27th, I still have it.  Had to walk with a stick at the beginning and at college I use the lift but the week it was broken I was white knuckled and gritting my teeth by the time I made it up one flight.  It's SO painful.  And more so for the rest of the day, after I taxed those sore muscles so hard. 

 

Have asked the GP to ring me, but nothing yet after three days.  

Share this post


Link to post
Procrastinating
Stumbler

This isn't good service from your GP's Practice, @Happymama

 

Did you have any joy with the eConsult service, which specifies a response by the end of the next day, or the local MS Nurse?

 

How long ago was your last Neuro consultation? Are you due another one? If not, your GP should refer you again or come up with another wat forward.

Be a pest to your GP. Keep hounding them but always be polite.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Stumbler, my last consultation was my first consultation, during which my neurologist told me he would find out what was wrong with me, MRI'd my head and neck on a 3 tesla MRI machine, then six weeks I was called forth to see him, an acolyte half my age told me there was nothing wrong with me, and to see my GP about my symptoms.   Three buses each way, that was. (Taxi was £35 each way! )   This was a long time ago.  2010.  

 

Second attempt ended up in me getting a letter with an appointment six months hence, I arrived there to find that I had cancelled it myself the day after it was issued which is of course a downright lie.  I left in tears, got the GP to ring me (pre covid, this was) and was in tears to her too.  I was SO ANGRY.  She found out he had told the practice that I wasn't bad enough.    ( I had had my right shin vanish for a time by then AND the backs of my legs go weak, so not small uninteresting symptoms) She promised to find me another neurologist.  Then covid struck and here we are with a totally dysfunctional NHS the services of which I seem to need once a year for eight weeks or so.  

 

My relapse is over, just over 8 weeks. Now I have a new symptom, which is electrical pain in the skin on my head, just above my right ear. Started last night and was there when I woke up.  Now gone. Never had it there before.   Think this relapse might be related to my sudden episode of PVD, which left me with internal bleeding in both eyes, and had to visit the hospital at a certain time the next day, couldn't find a parking space, had no cash for one if I had, drove around till after my time getting hotter and hotter under the collar, to finally find a FREE non restricted parking space (hen's teeth) and ran.  That was in the end so stressful it gave me the runs.  Very rare, that.  Relapse a month later.  No idea what caused the relapse in Nov 22.  

 

Did you know that to be electrocuted is, in the eyes of the law, 'cruel and unusual punishment' that constitutes torture?  

 

 

Share this post


Link to post
Procrastinating
Stumbler

@Happymama , it's time to summarise your symptom diary. List each symptom with the start date, duration and brief description. You can use copies of this to give to any of the medical professionals that you see. You need an explanation of these symptoms!

 

Bear in mind that MRI scans do not always show the problem.

 

Did you have any joy with the eConsult service or the local MS Nurse?

 

it may be time to have a chat with your Neuro's Hospital's Patients Advice & Liaison service (PALS) to discuss  the events to date. They may be able to help.

 

:moonieman:

 

 


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Hi there. I do have a symptom diary (here, lol) and at home.  

 

I don't have an MS nurse, can't even get to see the ruddy GP.  

 

I don't have a neuro hospital.  

Share this post


Link to post
Procrastinating
Stumbler

@Happymama , has your GP told you to find another Practice. If not, they can't refuse to see you. Is it the Receptionists not being able to find a suitable appointment?

 

Your Neuro's hospital is where you went to see them.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

I asked her to find me another, she agreed as I hadn't been treated very well, but that was before Covid.  Now it's near impossible to get a return phone call.  

 

And the dentist has sacked me during covid and won't take meon again - they are all across the road from me.  

Share this post


Link to post
Procrastinating
Stumbler

And, there's the problem. We need these people more than they need us!

Is there any way to reincarnate these relationships? It would be the best way forward even if you had to grovel for forgiveness.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Sluggish bowel is with me again.  I keep a diary and managed to head the issue off mostly.  Bit of lactulose left after the last one a few years ago.  Now a new bottle, and oddly, it's 1p less than three years ago!  

 

Left hip/groin/top of quads has now settled into a permanent nagging thing. Sometimes on, sometimes off but usually waiting to catch me out.  know when you crick your neck and it hurts a lot? I  get that in my hip.  Eg gads, it hurts!  I think arthritis is in there and mixing with the spasms.  Have had the tingling on my shoulders as well, last few days ago.  No electric shocks though, that's an odd one.  None at all.  

 

Seeing a health work coach next week and back at college, diploma year on Tues next week too.  

 

Wish I could sleep better.  four am yesterday, three today.  

Share this post


Link to post
Procrastinating
Stumbler

Do you get the feeling that it's just you and me (and Marina), @Happymama ?

 

It seems that "forewarned is forearmed" is the strategy that you're applying to your sluggish bowel problem. It's a good way of managing it.

 

Physical type of pain could be assisted by some gentle Pilates/yoga stretches. Just remember what my Pilates teacher used to say, "make the moves challenging, but not to the point of pain or strain!".

 

Best of luck with your Diploma year. If you want it, you'll go and smash it.

 

:moonieman:

 

 


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Sluggish
Marina
On 08/09/2023 at 07:15, Stumbler said:

Do you get the feeling that it's just you and me (and Marina)

:lol4: John! Believe it or not, we do get people reading, they just don't post (or they join and rarely post and then don't return) :cry:

 

I live with a sluggish bowel, probably have IBS too (which I did before my DX). Years and years ago, I used to occasionally use Lactulose, but then it started to give me belly ache. The only laxative I find gentle enough these days, and without making me bloat like a beach ball (which I already do anyway) is Senokot in tablet form, which I only take when really needed.

 

Have you been able to see a neuro physio for your various pains?

 

I'll echo John in wishing you best of luck with your Diploma year!

 

PS - I'm late in replying as I did a gentle stretch in bed on waking (arms above my head) and immediately felt what feels like a pulled muscle in my right shoulder/neck, ack! So took a rest from the computer for a couple of days.

 


Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
Balanced
Happymama

Hi again.  Full moon on Friday so didn't sleep at all last night and had college today.  I've lost a load of weight over the last year, two and a half stone and can run up the stairs again.  

 

I quite enjoy the effects of Lactulose.  Full on rolling farts, absolute whoppers.  Deeply antisocial and it does say on the bottle take it after you go but if I go on Tuesday morning I can't with college later.  Would be embarrassing.  So I take it at night and can tell if I've had a good night's kip - I let them off in the morning.  If I've had a rubbish night, my innards keep going and it's all gone by morning.  

 

There's a new article on the Financial Times website, (you get three articles a month free) about immunology and how reverse immunology may have found a cure for MS  - it works on MS in mice.  It's been published.  

 

It's on the front page, further down, on the http/app.ft.com

 

The spasms in my upper leg and groin seem to have vanished. I can even go up the stairs at college properly.  So the sluggish innards are not relapse related, it is just broken.  Lasted 11 months last time.  

 

First day of counselling each other, others were really rusty (who were there last year with me) but I dived in and the most critical feedback person wrote it up as amazing, and well done. I do love doing it.   Lots of new people there, some never done any.  And I'm really hot on the computer keepup now after last year's debacle at the end of the school year.  

 

Am also trying to get a job.  Job Centre is a bit of a nag over this, but I guess with UC and not paying my council tax I could make an effort. Have asked for free meals at college so if desperate I could go every day.  

 

I've started buying Christmas presents, ouch car tax this month, plus tv licence, and car insurance next month.  Need new seatbelt bits too.  All cost.  

  • Like 1

Share this post


Link to post
Procrastinating
Stumbler

Thanks for the boyish giggles, @Happymama .

 

Generally, it's a good news story, which sounds very encouraging. And, you're starting to get Xmas preparations underway now!

 

And 2 and a half stone lost. Well done on that.

 

I also found another article on Reverse Immunology here :-

 

Medical News Today

 

Keep up all the good work.

 

:moonieman:


Edited by Stumbler
  • Like 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post
Balanced
Happymama

Read that article and a few others on there.  Interesting.  Thanks.  

 

Do enjoy other articles on the FT. The videos, podcasts (the ones in the Personal Finance section are very accessible for everyone) are all free as well, as occasionally there are marked 'free to read' stories as all the ones on Covid were, as well as some on Brexit.  Plus your three free a month articles.  It's pretty well unbiased politically, I find.    There's an article about recycling clothes you already have, wearing them with things you might not have before and go for 'unexpected shoes'.  The latter fascinates me.  I have some really different shoes and might start doing that.  

 

I forgot the lactulose the last two nights (OMG) but had some after a bit of a go today.  Am having some more tonight and two dulcolax, up early to get on with it before college.  The spasms in my upper left thigh are hanging around, and i had a WHOPPER of an electric shock attack on my left foot last night.  

 

 

Share this post


Link to post
Procrastinating
Stumbler

@Happymama , I'll leave you to the fashion stakes. I'm no Imelda Marcos with my one pair of training shoes............

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Similar Topics

    • Is it a relapse then I'm confused lol

      Hi all hope everybody is doing ok . I wanted to know if my Lhermitte's sign has come back the last few days does That mean I'm having a relapse then or not lol confused :o/ no other symptoms though , thanks Tracy xx

      in General Discussion about MS

    • What a relapse is to you

      I hope no one minds me asking, but after a very disappointing and rushed consult with a new neuro I feel the need to question myself constantly. Reflecting on the various episodes that have led to neurologists querying me having ms, they seem to follow a particular pattern.   The first thing I am made aware of is a fatigue that becomes more and more apparent over a few days, to the point of being completely floored by it. Simple tasks make me need to go and lie down. Then various symptoms such as loss of balance, new areas of numbness, pain kick in. A symtom can last for a week, such as balance issues, then appear to improve, only to be replaced by another differing one.   Does this ring a bell with anyone else?   Thanks in advance.   Sam :-)

      in General Discussion about MS

    • Relapse Recovery

      Hi everyone, just joined here to get some support from you all. My father has had Multiple Sclerosis for 38 years (well before I was born), he was never given a particular type of MS, but he has been very stable all this time....he has had slurred speech, bad balance, frequent falls throughout this time but it is only in the last six weeks his walking has really suffered, dragging his left foot, having to walk with a simmer frame....then last week he got admitted to hospital with a sever relapse, unable to stand or walk, his speech has really suffered, very weak and tired...he has left sided weakness in his left ARM and leg.....its so upsetting....he has just completed 4 days of IV steroids and he is so low, crying all the time, which makes me cry....we are trying to remain positive, keep reading stories on the internet to gain some hope about other peoples recovery time......he is still in hospital now, physio are trying their best to get him standing again....he is such a proud and independent man and he is not used to being immobile....so basically I am on here to see if people have had positive outcomes from iv steroids and how long on average does it take to overcome relapses...I know everyone is different, but just want some idea....my dad is nearly 75 years old, he is a very fit and strong man otherwise....thankyou x

      in General Discussion about MS

    • is this a relapse?

      Hi all i have not been too great since monday just gone. Balance completely went monday then it was okish tuesday . Wensday was a washout with balance and legs went too. Friday was just awful spent the dsy in bed sleepping. Today my head is s bit fuzzy and legs r awful again.   As im newly dx with rrms i dont know if this is a relaspe. According to my neuro and physio ive had a couple of relaspes in the past year which i wasnt aware of because i didnt get any new symptoms just reacurring ones that got worse ie legs wouldnt work ftom last october (and havent fully recovered yet) plus terrible spasms in my right side (so painful) which eventually disappeared but its now returning!!   I was expecting a dx of ms so it wadnt a shock but i hadnt realised it was RRMS. I finally had a good cry yesturday about it all (took 3 years for the flood gates to open lol) At least i know doors will open for me now. Dpoke to physio and i was pleased to hear that my ms nurse and physio work closely together which is a bonus. I meet my ms nurse on the 12 of june and i know i have decisions to make about DMD's. I hate needles but i will suffer it only to slow this bugger down.   So is this a relapse or not???   Ur advice would be greatly appreciated   Vanessa xx

      in General Discussion about MS

    • MS Relapse? Please help me

      Hi, I would like to ask a question..... Is this the start of a relapse.? Right leg is dragging slightly, right hand is struggling to write with. Another question, if it is I would to know if anyone has any tips to slowness it or stop it. My sister gets married in May in Greece and I really don't need a relapse right now....... Well ever but that's not a choice I get to make.   Please help with any advice you might have. I will say. I know of steroids but really want to avoid. It's not too bad yet but I need I to not have any effect on my forthcoming holiday. Thank you Mandy x  

      in General Discussion about MS

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
×