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.
LollyW

Help! Anyone else have these symptoms?

135 posts in this topic Last Reply

Recommended Posts

LollyW

Thanks ladies and gents :-)

 

However I have been feeling really nauseous on and off the last couple of days, since I increased the Baclofen and I haven't seen any improvement with my symptoms.

 

I only started it on Monday. Thinking I'm going to stop taking it for now and speak to my Neurologist on Thursday about it. Feels like it's doing more harm than good :(

 

Is it safe just to stop or do I need to wean myself off? This is only day 6 on them. I'm hoping it's safe just to stop as I feel ropey.

 

Lolly x

Share this post


Link to post
LollyW

I also get a horribly dry mouth. Bit like a constant hangover without the alcohol!!! Lol.

Share this post


Link to post
Marc

Thanks ladies and gents :-)

 

However I have been feeling really nauseous on and off the last couple of days, since I increased the Baclofen and I haven't seen any improvement with my symptoms.

 

I only started it on Monday. Thinking I'm going to stop taking it for now and speak to my Neurologist on Thursday about it. Feels like it's doing more harm than good :(

 

Is it safe just to stop or do I need to wean myself off? This is only day 6 on them. I'm hoping it's safe just to stop as I feel ropey.

 

Lolly x

 

Sorry it doesn't seem to be working for you.

 

You're only on a low dose aren't you? Shouldn't be any problems with stopping.


It's not the hand I wanted to be dealt but I'll play it anyway.

Share this post


Link to post
LollyW

Brilliant, thanks Marc. Was hoping that would be the case.

 

I'll just stick to the Gabapentin for now.

 

Thanks.

 

Lolly x

  • Like 1

Share this post


Link to post
Nick

I feel that most of us here have learnt to understand our meds and what doses suit us. I know I was advised to vary doses to discover what suited and to discount things that were either inaffective or had adverse effects. We are all different and what suits one may be wrong for somebody else. The drugs we are talking about here are to relive symptoms and are not DMD's.

Another point to raise is perhaps the 'cumulative' effect of drugs like Gapbapentin/ Pregabilin, I feel these take some getting used to and some side effects may disappear with time.

These are things to discuss with your Neurologist who is, after all, the specialist.

Anyway it's great to see you getting such brilliant advice

 

Nick


Just another Warrior...........

Share this post


Link to post
LollyW

Thanks Nick, I agree absolutely. The advice and support I've received on this forum has been amazing and I am truly grateful to you all for your help.

 

I have asked question after question, vented about my symptoms and feelings and the feedback has been fab :-)

 

2 more sleeps to go....

 

Lolly x

  • Like 1

Share this post


Link to post
LollyW

Hi guys,

 

Quick question, I know it's never ending (sorry!)

 

Does anyone suffer with sciatic nerve pain?

 

Seeing my Neurologist tomorrow for test results. Hope it's a double appointment with my list of questions lol :-)

 

Lolly x

Share this post


Link to post
Sluggish
Marina

Yes, I get sciatica, but it's not due to my MS, it's a separate spinal issue I have that causes it.

 

Good luck with your neuro appointment tomorrow! :goodluck:


Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
LollyW

Ah bless you Marina that's horrible. I think it might be my sciatic nerve playing up but I'm not sure my symptoms are typical of sciatica.

 

Thank you for the good luck message :-)

 

Lolly x

Share this post


Link to post
Sleepy
Scully

Hello Lolly,

Sorry I've been a tad quiet of late. I was representing in a very complex court case this last week, and the paperwork and statements were never ending! Anyway, we won our side of th case, for now.

It's all left me a little fragile as it's been hard work, but the result was worth it.

 

Any side effects of Baclofen may take a couple of weeks to wear off. As the others have said, it can affect us all differently. I think it took a good month to feel the effects of Baclofen relaxing my muscles.

 

You've had some great advice thus far, and today is the day. Try to stay calm if you can. Whatever the result may be.

 

If it's MS, then ask if they know what type? And how they are planning on treatment?

If it isn't MS, ask what they think it is, and how they are planning treatment etc..

 

We will all be thinking of you today and await your post. Whatever the result, we are still all here to help you.

 

Never apologise for questions or for venting!

 

Scully

x

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
LollyW

Well done on your court case Scully! Glad it went well but sorry to hear you're not feeling great.

 

On a positive, I've not had my burning sensations for best part of a month, maybe that's the Gabapentin. However they've flared up these last couple of days. I'm thinking it's the anxiety I'm experiencing about today.

 

I will use your advice about the questions when I see my Neurologist later so thank you for those.

 

5 hours to go and counting....

 

Will keep you posted.

 

Lolly x

Share this post


Link to post
LollyW

Ok so no diagnosis but this is what I do know so far...

 

Lumbar puncture came back clear which is a positive thing. He said as there is not enough evidence to diagnose MS they need to rule out other conditions.

 

Just had bloods for Sarcoidosis and Sjogren's Syndrome.

 

He said he's not convinced the lesions on my spine and brain are linked as the one on my spine looks like it could've been there a while. But there is obviously inflammation on the brain that looks more recent.

 

He said this can be quite typical of MS when it comes to diagnosing but at this moment in time there's nothing convincing to suggest it is that. Again he said this is a positive thing.

 

He's sending me for another MRIon my lower back, lumbar spine to see if it gives any clues as to what's causing the weakness and aching in legs and hideous sensation. The MRI will just be on this section of the spine so they are taking a closer look. He said one of the images on my first spine MRI shows there might be a disc skimming a nerve which could be causing these sensations and feelings. Again, the second MRI will look at that.

 

Evoked potentials weren't back, annoying! He will chase the results and call me in a few days.

 

He is liaising with his colleague, who is the MS Specialist and specialist of similar conditions to get a second opinion.

 

So yes, I know nothing more at this stage. Frustrating.

 

Lolly x

Share this post


Link to post
LollyW

Has anyone else had a negative LP?

Share this post


Link to post
Nick

Hi Lolly,

 

Frustrating yes, but also positive. Your Neurologist sounds as if he is doing a great job in trying to get to the bottom of your problems. All this investigation is what it sometimes takes to get something more definite. My own diagnoses was actually pretty quick with the LP giving the conclusive 'evidence' So having a 'negative' result must be a positive when it comes to MS. Its hard to take the fact that you still have nothing conclusive, yet this is the nature of things when it comes to anything to do with Brain and CNS. The good thing is that things are being done to gain a better understanding......Hang on in there and don't worry if its not MS as far as this forum goes, as you now know people here are brilliant and are still here to support you.

 

Nick

  • Like 1

Just another Warrior...........

Share this post


Link to post
Sleepy
Scully

Hello Lolly,

 

I agree with Nick, inasmuch as your team are clearly wanting to get to the root of the problems for you.

 

Not much consolation I know when you feel you are perhaps no further forward with it all, but as we all said I think at the start. It can be a case of ruling absolutely everything else out and seeing exactly what's left on the table.

 

Think like this if you can. Your symptoms are the same, you still feel as you did, so, it follows that's something wrong, somewhere.

 

Try and keep your chin up. It's easy for some people to 'feel like a fraud' when that's absolutely not the case, so don't give in to such feelings.

 

Your neuro team will get to the bottom of it, the inflammation is clearly being caused by something.

 

With regards to the LP. I read somewhere that some neuros don't bother with an LP. But they do if the other tests aren't quite as clear cut.

 

Hang in here with us Lolly. We will do our best to help, whatever the outcome may be.

 

Scully

 

  • Like 2

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
LollyW

Thank you for all the supportive messages :-)

 

So my LP is clear, my evoked potentials are normal and my bloods are squeaky clean. I'm really glad, don't get me wrong, but I'm beginning to think I'm going crazy.

 

I have to have another MRI, just on the lumbar section of my spine. Then a repeat brain MRI in a couple of months. Other than that my GP is doing all she can to relieve my symptoms. I am decreasing my Gabapentin over the next few days and introducing Duloxetine.

 

All of my burning sensations, mainly in head, face, neck, chest and shoulders have flared up again. It's been a month since I've had it, hence the trial of new meds.

 

Apart from vibrating feet, my spine and legs have been ok the last few days.

 

I don't understand what's going on. It seems there is no light at the end of the tunnel, we are no closer to a diagnosis and I honestly feel like I'm starting to doubt what's going on.

 

Am I making the symptoms appear? Is this all in my head? Apart from a subtle area of signal change on my brain MRI, there's nothing else to go on. My consultant thinks the area of signal change on my spine MRI is longstanding and probably isn't even related to any of this.

 

I'm due to return to work on 31st. Not sure I'm in the right frame of mind but I'd feel like a fraudster taking more time off as there doesn't appear to be anything wrong with me.

 

Sorry for the rant and please don't think for a second I am not grateful for the negative and clear test results because I truly am. I'm just so frustrated about the whole situation. Limbo land is not a nice place :-(

 

Thank you for listening. Sorry again for venting.

 

Hope you're all ok.

 

Lolly x

Share this post


Link to post
LollyW

Does this rule out MS altogether?

 

Lolly x

Share this post


Link to post
Nick

No, I would suggest that nothing is ruled out. That is not to say that all your investigations are proving negative . Clearly they are closing in on finding out what's wrong. Its really difficult for you now, but as I said before, it looks to me as if lots is going on to help.

I think its difficult all ways, that feeling of being a 'fraud' is something a lot of us have to tackle. MS is a prime example of a condition that can feel so invisible to the outside world. You must also allow yourself the privilege of having more time of work if you need it, we all work so hard and most people hate taking time off, yet if you need it, you must listen to what your body says.

Above all never say sorry for ranting off on here, that's what you need and that's a very good reason for us to respond, knowing as we do just how you feel.

We are all thinking about you and all hoping you get a more detailed analysis of whats happening soon.

 

Nick

  • Like 1

Just another Warrior...........

Share this post


Link to post
Sleepy
Scully

Hello Lolly,

 

A lot of us have been though this...the neuro team can be reluctant to pin any sort of 'label' on us if we don't meet the 'criteria' for MS. It's called the 'Macdonald Criteria for MS' which the neuros all adhere to..

Just because you don't meet the strict criteria, it doesn't mean your symptoms aren't real, and exactly the same or worsening as they were before.

 

I went though something similar. I was diagnosed in London with PPMS, later after a whole barrage of extended tests, ( even mad cows disease !) they decided that maybe it isn't MS, and put me straight back into limbo land, with a simple shrug of their shoulders...

A year later, after several flare ups and two attacks of Trigeminal Neuralgia, they pinned the label of MS back on...

 

I know quite a few people who have passed though this forum, who, have had a hard time getting any sort of diagnosis....it happens, unless, the MS is clearly obvious...very often it isn't...

 

And that's all it is, a label...your symptoms are the same, or worse, there just isn't a label...yet!

 

As I said in my previous post above '" Try and keep your chin up. It's easy for some people to 'feel like a fraud' when that's absolutely not the case, so don't give in to such feelings."

 

Why are you tapering off the Gabapentin? I though it was helping? You may not have a a required label as yet, but, if the meds help at all, there is no reason why you shouldn't take them to help you? They aren't confined to MS patients.

 

Hang in there, see what the new MRI throws up, and keep a brief daily diary of what's happening with symptoms. We forget stuff, and sometimes, when we look back, it can be helpful.

 

Scully

x


Edited by Scully

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

Share this post


Link to post
LollyW

Morning,

 

Thank you for the messages. I honestly really appreciate your responses. It helps put things in perspective from someone who's been there.

 

My GP suggested halving my Gabapentin and introducing the Duloxetine as my burning sensations have flared up again. She said if it's the stress and/or anxiety with everything going on then the Duloxetine should help. I think it's just a case of trial and error. I can only assume the Gabapentin is helping as the burning sensations have been pretty much non existent for a month, but have flared up again just recently. It coincides with my meeting at work, just a catch up, followed by my appointment with my Neurologist so probably stress/anxiety related. I'm guessing that's what the Duloxetine is for; to hopefully prevent stress related flare ups. Do you think I'd be better staying on the higher dose of Gabapentin?

 

I know you guys are right, I do need to hang on in there and try and carry on as normal. It's just so hard to try and forget about it all when you're desperate for answers. We are drawing a blank with every test and I feel like I'm banging my head against a brick wall. You never know, the Duloxetine might help me in that respect too.

 

Don't get me wrong, I know this only started in March and I've been lucky to have had the care from my GP and Neurologist that I've had so far. The tests and scans etc have been reasonably quick. I just keep trying to tell myself with every negative result, that's another thing ruled out! We will get there in the end.

 

As always, thank you :-)

 

Lolly x

  • Like 1

Share this post


Link to post
LollyW

Hey, just a quick one. Does anyone get pain in their hands? Almost like painful twinges or sharp pains mainly in my fingers. Just started a few days ago.

 

Thanks.

 

Lolly x

Share this post


Link to post
Marc

Hey, just a quick one. Does anyone get pain in their hands? Almost like painful twinges or sharp pains mainly in my fingers. Just started a few days ago.

 

Thanks.

 

Lolly x

 

Yes Lolly, I get this, usually in the tips of my fingers. doesn't last long though. My physio calls it neuropathic pain.

  • Like 1

It's not the hand I wanted to be dealt but I'll play it anyway.

Share this post


Link to post
LollyW

Thanks Marc. I notice it more in the evenings when I'm resting. Can't say it's limited to my finger tips though.

 

Hopefully short lived like yours...

 

Lolly x

Share this post


Link to post
LollyW

Hi all,

 

Hope you're all ok.

 

Just a thought, anyone think it's worth going for an eye test? I know some neurological conditions can affect the eyes and optic nerves etc. On examination the neurologist did look at my eyes but I'm not sure how much they know and can actually see compared to an opthalmist.

 

I have now halved my Gabapentin and introduced the Duloxetine. My burning sensations have been bad these last few days but my legs have been ok mostly. I'm wondering if it's due to the decrease of Gabapentin or just coincidence. I'm praying when the Duloxetine kicks in it will calm it all down. If not, I'll be weaned off that and back on the higher dose Gabapentin I guess. Trial and error...

 

I have an MRIon 17th on the lower part of my spine. I'm feeling lots of pressure at the base of my spine lately. Anyone else get this?

 

Thanks guys :-)

 

Lolly x

  • Like 1

Share this post


Link to post
Nick

Hi Lolly,

 

It's always a good idea to do an eye test. The common MS condition to do with the eyes is Optic Neuritis. Signals to the eye (or eyes) is disrupted by damage to the myelin. The effect of this is to experience partial loss of vision. My experience of this was to have blurring of vision in one eye. It can effect both eyes. In my case I lost the use of this eye for a couple of months, before the vision slowly returned to 'near normal' Colour vision as tested by the Ishihara method, you know those funny looking numbers made up of coloured dots, during an eye test show loss of colour vision.

 

Good to know you are going for another MRI, I don't have any feelings of pressure on my spine, so can't really give any useful advice.

Trial and error with those pain killers is the way to go. This is a continual process, the 'expert' will soon be you! So don't be afraid to keep adjusting things.

I've used Gabapentin, Pregabalin and Duloxitne. Presently I use Pregabilin, Baclofen along with Citilopram and Modafinil. The worst of it is I used to avoid ALL medication for many years before MS........even avoiding the likes of paracetamol!!!.

 

Ce la Vie

 

Nick


Just another Warrior...........

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

    • Onslaught of new symptoms?

      Hi, first time here. Have had relapse remitting MS for about 20yrs and after a tricky start despite the odd flare up have had very few major issues for around 15yrs. Last year or so I have had the feeling of lots of minor increases in symptoms/ mini flare ups but in the last few months I have seen a massive increase in pain, cognitive issues, fatigue etc that just seem relentless. Have undergone a variety of tests (unrelated to MS) all of which come back as without issue and GP’s current best guess is depression and or IBS. I don’t feel depressed but I am in constant pain which is sapping my energy now. MS nurse is trying to get a consultant to see me (last few yrs all appointments have been phone calls only). Anyone have any words of wisdom or comfort 

      in General Discussion about MS

    • More new symptoms...experience/advice?

      Hi all. Hope everyone is doing as okay as can be! I've had these new symptoms for about .. 2-3 months now.. they're driving me insane.. My jaw/teeth clenching together. I'm not knowingly doing it. Just happens. Starting to really hurt my jaw and teeth from the strain and pressure of it. Also my eyes have been automatically squeezing closed. Sort of a similar feeling to when cutting onions (minus the tears and stinging) but that urge to squeeze the eyes shut. Does anyone else experience these? Thank you!

      in General Discussion about MS

    • Why heat causes or exacerbates MS symptoms

      Here’s an explanation about heat sensitivity and raised body temperature in MS.   Heat – Multiple Sclerosis Research Blog MULTIPLE-SCLEROSIS-RESEARCH.ORG My thoughts are for our readers with MS who are having to live through and cope with the latest heatwave. The BBC has just reported that this is the hottest late August bank holiday on...   I must admit that I didn’t stop to think that the heat of this weekend is why I’ve been saying my vision seems blurrier than usual! Doh..!  

      in General Discussion about MS

    • New symptoms and scary

      Hello. I was diagnosed with RRMS in 2014. Until the last 6 months, I have been coming down with fever so bad it puts me in bed for days and nights. I'm taking Aubagio 14mg daily. It's really starting to change my life. My gp is useless and does not listen. Neither does my ms nurse  . Nothing gets investigated and I feel so let down.

      in General Discussion about MS

    • Do my symptoms sound familiar?

      Hello   I hope no one minds me joining and posting here. I don't have a diagnosis of MS but I have a long and tedious list of random symptoms. I feel I'm being fobbed off by my GP who seems to think I'm either a hypochondriac or depressed. I don't think I'm either. I know some of the following are normal for a 45 year old working mum, but I'm listing everything to give a full picture... 
        Stomach issues and weight loss Twitching muscles / nerves and jerking fingers Sore, burning patches of skin (shoulder / armpit and thighs) Weird numb, weak feeling in left forearm Stiff, weak hands Clumsiness Blurred vision at times Lower back pain Random pins and needles Poor memory and concentration Dizziness / feeling spaced out Exhaustion Anxiety Zero libido   I've had various tests and the only things that have come up are B12 deficiency (not pernicious anaemia), positive ANA and a hiatus hernia. GP says that none of these are likely to be causing my symptoms. I experienced a sudden earlyish menopause a few years ago but HRT hasn't helped me feel better. GP is reluctant to treat B12 as tests for PA were negative, despite me eating a good diet and taking supplements at the time.    The burning skin, finger jerking and weird feeling in my arm are new symptoms over the past couple of months and are what has led me here.   I know nobody here can diagnose me of course. I just wonder whether my GP should be doing more. They don't seem remotely interested to be honest.   Thank You
      H

      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.
×