Just what planet do a lot of this so-called neuros live on. Each time I mention a symptom I am told 'oh no that’s not MS!!!
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Wake up most mornings aching and feeling as if i never went to bed
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Can’t we just have the word removed from the OED?
I carried on working for far too long with early mornings and late nights.
After retirement, I have slept more but the fatigue didn’t stop.
Now people think I’m outrageously lazy. I am. It’s a survival technique.
Steve
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I have two relatively young kids, so I kind of got used to functioning when sleep deprived. But since MS it’s a completely different tiredness. I wake some days feeling enthusiastic and get stuff done, then spend the next two or three days suffering from my exuberance. Other days I struggle to find motivation to do things. I can’t remember when I last felt refreshed.
Hi all MS friends
I am new at this as have not wanted to discuss my MS just wanted to block out
I have just started Macrogol as been bloated for weeks with no bowel movement and very little sleep. i have declined all medication so far but at end of tether now and decided to go with meds. just started to taking Gabapentin plus Macrogol.
Can i please ask anyone if on above to let me know how it affects you. Kind regards x
Hi Janet j just to say I too take gabapentin, it does help with the pain and spasms but you do gain weight so I plan more walking and swimming.
Hello Janey
Welcome to the forum.
It takes a little while to figure out how these things work, but what you’ve just done is to reply on a thread about waking up feeling cr@p with your question about Magrocol / bowels.
You normally get more relevant answers when you start a new topic up. You just hit the button that says New Thread, give it a title then post whatever you feel. Then people will reply to you (although I can see that you’ve had one reply anyway, from Nicnac!)
Magrocol is the generic name for products called Movicol or Laxido. Many, many of us take these. It’s a fact that MS gives us slow transfer through the bowels and slow or difficult evacuation of bowels. It’s a curse! I have taken somewhere between half and 2 sachets of Magrocol a day for years. The idea of this stuff is that it both softens your poo and gently stimulates the bowel. You can take a larger quantity if completely bunged up, but until you are used to taking them, stick to maybe one sachet a day unless you’re doing it under the guidance of a continence nurse / doctor.
All the variants come in several flavours, the most common is orange flavour. At least that’s what it says on the box / packets. Personally I hate it. For years I took what’s billed as lemon and lime flavour (although I don’t think it actually says that anywhere, they just say ‘sugar free’). But not long ago I discovered Movicol ‘Plain’, which tastes of nothing, it’s just like drinking water. I am a total convert to it. But have had to have my prescription changed to directly say Movicol Plain.
See how you go for a few days of one sachet. If it’s too much, just use roughly half the sachet at a time, and if not enough, increase by half a sachet at a time until you get to the dose that suits you.
Best of luck.
Sue
It is a completely different kind of tiredness, I feel it’s like my battery has just run out and my body just won’t work. I have to stop, when people say oh I feel tired all of the time I try to explain that it is way more than feeling ‘just tired’ to which they say get more sleep then! I would need to sleep my life away if that were the case!
Well when I first saw my neuro he said he thought I had MS then dismissed it since despite being advised by the radiographer that my lesions are specific to MS with demyelination and in areas specific to MS. They are certainly weird people that’s for sure
Hi
I just bought a new mattress from Otty, which is really comfortable - a combination of pocket springs and memory foam, and doesn’t get hot like memory foam ones do. And while I wouldn’t say I wake up feeling refreshed, I do generally wake up less groggy than I usually would.
Dan
I am fully diagnosed and have been in an active regression for over a year now but I have not been able to obtain a prescription for MS meds. You have to have a positive LP, multiple lesions and and two other symptoms that have been tested and confirmed. It’s because they are very expensive and they can have lots of negative side effects. I have been epileptic all my life and have a one year old so my neurologist didn’t want to give me anything that would be more of a hindrance. I don’t know if that helps in any way.
Hello
(You might get more replies to your post if you start a new thread rather than joining another that’s titled something quite different.)
The rules for a disease modifying drug (DMD) aren’t exactly as you’ve said in your post.
The McDonald Criteria gives the guidance on diagnosis of MS: McDonald criteria | MS Trust Essentially it’s about having clinical evidence of demyelinating lesions disseminated in time and place (so lesions in different places within the CNS and separated in time).
This is the full NICE guideance on prescribing DMDs for MS: Multiple sclerosis | Topic | NICE
It’s not having two MS symptoms, it’s two relapses within the last two years that’s the important thing.
In your case, clearly the neurologist also wants to avoid anything that would possibly increase your epileptic seizures.
Many neurologists will ‘push’ the criteria a little if necessary to get a person with RRMS on a DMD. There are drugs that are less likely to cause unwanted side effects. I’m sure that if you were very keen on getting on a DMD, your neurologist would work with you on finding a drug that would be suitable for you.
As you’ve been relapse free for over a year, I should think the neurologist would be right in not prescribing, both in terms of the NICE guidelines and your specific case. Should you start relapsing, you and your neurologist would probably be sensible to look at the drug therapies again.
Meanwhile, it’s brilliant that you’ve not relapsed. Many women relapse just after giving birth, so it seems that you’ve been lucky (if you can ever be considered ‘lucky’, when you have MS). Hopefully that will long continue.
Sue
1997