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Poorly or MS

Hi All,

Advice please, I am only recently diagnosed (11th March) not got an MS type yet but looks like progressive so far. Have my LP on Friday.

I felt really poorly yesterday, like I had flu, how do you work out whether it’s your MS or you are poorly with something else? I don’t want to give in to MS or start blaming everything on it.

I am absolutely shattered had to sleep for 2hrs when I finished work yesterday. Am waking at 03.00 & 04.00 in the morning. (Get up for work at 04.50).

Urinary hesitancy and constipation bad since Sunday.

I haven’t taken any sick time off work to date as I do not want to give in to it I am full time. Have booked some sick time for LP as no way I could fit the hours in around it.

Snowqueen

There an old saw about the woman who hobbled round on a broken ankle for 6 months saying “it’s only my MS” it’s a problem trying to decide if you have something else wrong or if it’s just same old same old. Drs are also quick to dismiss everything so it’s a bit of an uphill struggle.

it sounds as though you might have a low level infection. Infections can make MS symptoms go into overdrive. Fighting off a cold can leave you whacked out and suffering. Please don’t feel that this is “giving in” to MS. It is not helpful to be adversarial with a disease that you can’t master by strength of will. Have a positive attitude by all means, approach everything with a can do state of mind but you need to find ways of living with MS, working round it, finding different ways of doing things but not setting yourself with your fists raised at something that you cannot knock out.

It is VERY early days yet and you have only had a few days to get your head round things and I understand the knee jerk reaction to be strong and determined but sometimes you have to be gentle with yourself and accept that you might need to rest or take things a bit easier now and again. It’s MS not a character flaw.

jane

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hi snowqueen

the dreaded fatigue is in my opinion the most disabling thing about ms.

so even on the (rare) days when my legs are behaving, the fatigue prevents me from enjoying it.

so the only option is to rest when it hits.

if your job involves lots of meetings, then you may need to go outside for some fresh air or risk nodding off!

constipation makes it harder to empty your bladder.

make an appointment at the bowel and bladder clinic. they are so helpful and make an absolutely mortifying subject less embarrassing.

​it is important not to be retaining urine because that can lead to infections which lead to relapses.

you will have your bladder scanned at the clinic, just an ultrasound like the ones used on pregnant women.

this will show how much, if any, you are retaining.

why are you presuming that you have a progressive ms?

it does seem that things get worse quickly but it usually levels out.

your very early into your ms so good luck and take good care of yourself

carole x

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Hi Jane & Carole,​

Thank you for your advice.

I am presuming Progressive because the Consultant said it doesn’t fit RRMS he said his concern is that my symptoms commenced in July and have slowly got worse with no improvement. I have multiple brain & spine lesions. He did say it’s too early to say for sure and that occasionally people have really long stubborn relapses but that 8months is not usual for RRMS.

I know I need to wait and see the LP Friday is for more information but I don’t think they can diagnose type from that can they?

Snowqueen

You can’t get better than the advice above!!

The only thing I am a big believer in, (and have since pre MS) is to be kind to yourself.

If you need a night on the sofa or a duvet day then so be it, we tend to carry on regardless and not give in (esp as we don’t like to ‘give in’ to this ms malarkey) but if you genuinely need to rest then do x x you are going through a very stressful time - it’s bound to take its toll. Just re-reading the old james herriot books and he always took time to stop throughout the day, savour the views over the dales and live in the now - the ultimate mindfulness meditation!! He reminds me to slow down on this treadmill of life!!

today my rest (as I was getting stressed) was to take my lunch 20 mins and read the paper whilst I did so instead of answering emails or marking books. Stupidly small but it worked and I certainly felt better after.

So be kind to yourself, you deserve it!! And good luck with everything x x

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I don’t understand why you still need an LP, if you’re a diagnosed person.

What if it’s clear: will you be “undiagnosed” again?

It’s a bit late to start querying things now, if it’s as soon as Friday, but personally, before submitting to an invasive procedure, I’d want to know what this mysterious “more information” is, and how it it benefits you (as opposed to purely being “for the record”).

I declined a LP, and was diagnosed without one.

The relapse that led to my diagnosis lasted a year, but I did recover eventually, and nobody has ever suggested it was anything other than RRMS.

​Tina

x

Hi Tina,

I am currently panicking about everything my head is all over the place.

My Neurologist told me I definitely have MS in his words “you don’t have a scan like that without having MS.” When I asked whether he was waiting for the LP to confirm that he did say the LP was just to tick the boxes. I told him I would have any tests or treatment he felt necessary, he did tell me that I didn’t have to have anything I didn’t want. As a nurse I trust a a Consultant to make the right call. The neurologist did also tell me to tell the DVLA, Car Insurance and start my claim on my Critical Illness cover.

I have been worrying exactly what you said Tina will he change his mind if my LP is negative? Reading around though a small number of people have a negative result but still have MS. Thinking I might phone my MS nurse today to talk to her about it all but I don’t want to be annoying. Do I just wait until Friday and ask the team performing the LP?

SNOWQUEEN x

Totally AGREE with you Tina. If your diagnosed there is no need to do such an invasive procedure, which can simply muddy the waters.

Sometimes i think they do that as they are not sure about the diagnosis or why do it. It isnt necessary i wished i never had mine, it made me ill for 2 weeks after and just muddied the waters because although i had the O bands i had inflammation in the blood as well which makes it negative for MS.

It was several years later after paying a lot of money out we found i had a co infection of Lymes which caused the inflammation in the blood, and the private doctor and now my neuro both agreed MS on my notes.

I would never have it again if i was diagnosed anyway what is the point. It is not used to diagnose MS it is used to see if something else is causing the symptoms. OTHER diseases have O bands…even inflammation…

BUT having no OB doesnt mean you dont have MS if you have other signs, positive tests etc.

I wouldnt go for it lol…

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I would ring your MS nurse and ask how critical it is. It isnt critical if you have an MS diagnosis, why be put through this LP?

It cant tell you anything more. It can show negative for OB but that doesnt mean you dont have MS.

I wouldnt have it personally if i had a diagnosis already. I was down for over 2 weeks after mine. No way again would i go through that lol. It didnt hurt or anything but if you read what i wrote to tina you will see why. xxx

You say you felt like you had the flu. The thing is if you have the flu, you ache all over, have a cold and maybe a cough.

The MS fatigue which i get and others get it feels like the flu…you just think I have the flu but nothing comes of it. the dreaded MS fatigue.

iTS A WARNING to slow down and rest more. I get all the urinary hesitancy etc, with my fatigue when i over do it. xxxxx

I certainly don’t think it’s a good idea only to ask them on Friday - they’ll be all set up to do the procedure, and it’s certainly not their call why you’re having it, or whether you should be - they’ll just do everyone who’s booked in.

Sorry, I’d answer in more depth but I’ve got a train to catch - phone the nurse!

T.

xx

Hi Snowqueen

I am sorry that you are not well. With regard to the LP I think there is a push on neurologists to create a database on their patients. They want more information as how positive LP MSers fair against negative LP MSers with regard to treatments such as DMDs especially for research. I dont think it will make a difference to you individually but they obviously think your information will help solve the bigger picture.

Moyna xxx

So today I hit the wall. I have tried so hard to be positive & to keep going but I am exhausted I woke up at 03.00 and couldn’t go back to sleep.

I went to work today after having my bloods etc ready for Friday’s LP. A colleague asked how I was and the flood gates opened, trouble is once I started I couldn’t stop.

Feel really bad I have tried so hard to stay professional, I had to withdraw from a teaching commitment last minute. I am so lucky I work with some lovely people they all said not to worry but I do. I don’t want to give anyone evidence that I can’t do my job so feel like I let myself down.

The positive thing was today the Specialist Neuro nurse doing my LP on Friday rang to check I’d had my bloods done. She was fantastic we chatted for ages. She agreed it is possible the LP will be negative but that it is unlikely to change anything as there is lots of evidence to support my diagnosis. Even if it’s not going to change anything I am going to have the LP. Medical care is changing fast and any information that might help in future is welcome. Whether it’s a positive or negative LP.

The feeling unwell I have decided is Fatigue, I am not snotty and have no other flu symptoms so think I just need to listen to my body like many of you advised. Been curled up with my four legged friend on the sofa since I got in. Have left a message for my MS nurse about the bladder/ bowel issues so hopefully will chat to her tomorrow.

Thank You All for the support.

Snowqueen

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hi snow,

getting upset at work is really understandable, a MS dx is a huge thing to deal with, it’ll take as long as it takes for you to get to grips with it. it really is the same as the grieving process for most if not all of us. i’m glad to hear that you have understanding and supportive colleagues, good, their assistance is something that you really should accept.

as for your being told that you’ve most likely got one of the progressive types of MS, it strikes me that your determination to ‘not give in’ to your symptoms makes me wonder if you’ve been ‘not giving in’ to lots of other clues?! i ignored loads of little things for years, that i now recognise as MS symptoms. i finally ended up being dx when i had a huge and nasty relapse after falling on ice.

while i’m sorry whenever anyone gets one of ‘our dx’, i’m always glad that people are here listening to all these lovely experts, i know that i always feel better because of them .

enjoy your rest and furry cuddles when you can.

wendy xx

Snowqueen, my neurologist wanted an LP because (as he put it) he likes to have as complete a picture as possible on the files at the time of dx. Like you, I was content to trust him to make the right call. When you are under the care of a hospital specialist whom you trust, there is much to be said for going with the flow. Certainly, I prefer to go with the flow unless I have a better idea which, given that it is not my specialism, I rarely do.

Good luck with the LP. Mine was absolutely fine, and I hope that yours is too.

Alison

Goldengirl and Tina, sharing personal experiences on here is great. Doing your best to get someone into a panic about a test that her consultant neurologist has decided is clinically necessary is absolutely not great.

Snowqueen I think that it is important to remember that any medical advice offered on this Forum should be taken with a large pinch of salt. No one on here has any right to contradict your neurologist’s advice, or any basis on which to do so.

Alison

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Hi Snowqueen,

I was given my diagnosis of MS, 4 hours after my MRI, which happened the day after I got to hospital. I had at least 6 lesions and my neuro was quite definite that it was MS. I also had a lumbar puncture after a few days and flew home and got the headache from hell. I should have gone to my GP but didn’t know about post LP headaches and how to avoid them. I know now, thanks to the good people on this website.

You are supposed to lie flat for at least a couple of hours after and drink old-style sugary Coca Cola - as much as possible. It wouldn’t stop me from having another, if deemed necessary. Mine was positive. I started Rebif as soon as possible and it has slowed down my relapse rate.

I’m a musician and teacher and I am dead tired right now. I have a big gig tomorrow and I am trying to limit my energy expenditure. One more choir practise (joined to make friends and find more pupils) and then the gig.

I find that stress makes my right leg numb(er) and fatigue causes horrible nerve pain. I try to listen to my body and if I can’t rest, then there are lots of good drugs to help with nerve pain. I take Amitriptyline each night, as my neuropathic (nerve) pain is too much to bear without it. If the pain is really bad, then I have a low dose of Tegretol. There are many other drugs out there to help with fatigue pain. I also take Fampyra, which has helped me to stand for longer until the arthritis gets too bad! With MS you do end up rattling with the amount of pills that you end up taking, but it’s better than the pain.

I once had a relapse that lasted for 9 months. It’s not unusual for relapses to last for a long time. My neuro back then didn’t like steroids, so I wasn’t offered them. Now, I can go to the hospital and be on a drip an hour later. I don’t have progressive MS, however, it can take years to discover this. but if you are having relapses, there are some new and powerful drugs to help to manage this type of MS.

I hope all goes well on Friday.

K

Thank you everyone LP all done, all went fine, no headache so far apparently new atraumatic needles are reducing side effects. :slight_smile:

Spoke to my MS nurse today and am being referred to Bladder & Bowel clinic for my issues. Also referring me for a course on managing the Fatigue. I am going to try something to help sleep tonight as still waking at 03.00. Feeling more positive again. :slight_smile:

Snowqueen

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So in my case the LP was worth doing it was positive for O Bands so diagnosis confirmed 100%.

Snowqueen x

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Well at least you know now for sure. Wow though I must admit I am impressed with your laboratory as when i had mine done it took over a month before i got called back for the results. Fair play 4/5 working days for results and they say the NHS is rubbish. Think i am moving to wherever you are lol…x

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