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LollyW

Help! Anyone else have these symptoms?

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LollyW

Hi everyone. I have just joined the forum in the hope that I get some help and advice from others that share similar symptoms to me.

 

I have been suffering from neurological symptoms for 4 weeks now and am currently undergoing tests and am under the care of a neurologist. I have been told it's looking highly likely that I have MS but I haven't yet had a confirmed diagnosis. Just a quick summary of my symptoms.

 

I'm 32 years old and a mother of 2. I initially started with a headache and burning sensation at the top of my head. The burning then radiated into my face and it felt numb. My symptoms then progressed and the burning sensation would flare up in different parts of the body. I have experienced a brief feeling of numbness in my arm a couple of times. Restless legs would also keep me awake at night.

 

For the last couple of weeks the burning sensation continues on and off, mainly top of my head and forehead but for the last few days I have been suffering from a strange and irritating sensation in the base of my spine and weakness in my legs. Some days it's been so bad I have trouble walking. By the time I go to bed my legs ache so much and it can be very painful. I used to get growing pains as a child and it's a similar pain. I am booked in for an MRIon the spinal column next week.

 

Both my doctor and neurologist have said they suspect I have MS.

 

Has anyone else suffered from symptoms like me and then been diagnosed? I have recently read about Motor Neurone Disease (MND) and am petrified it could be that. I have so many questions unanswered but I know I have to be patient whilst awaiting diagnosis.

 

I had a brain MRI a couple of weeks ago and it shows an area of signal change in the lower part of my brain. What does 'area of signal change' actually mean, is it the same as lesions? Also if I do have MS, what is my spinal MRI likely to show? The weakness in my legs is frightening me the most along with my burning head. Has anyone found a good pain reliever for these symptoms?

 

Sorry for the long post. Scared and anxious at the mo.

 

Thanks x


Edited by Marina
Space out paragraphs for easier reading :-)

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Nick

Hi LollyW,

 

Welcome to the forum. Its a bit quiet around here just now but you will get some good answers. There is no easy way to determine exactly where your problems lie. Burning sensations and weaknesses are all symptoms you can get with MS, however MS is often difficult to clearly diagnose and the only person who can do that properly is your neurologist. I think what was being talked about with regard to 'area of signal change' is the disruption of nerve signals. In MS the Myelin sheath around the nerve becomes damaged and this disrupts the signals. See here: https://www.mstrust.org.uk/a-z/nerve-damage-caused-ms

In both brain and spin scans the neurologist is looking for the scaring of the myelin sheaths. See here: https://www.mstrust.org.uk/a-z/diagnosis

 

You should try not to worry to much about the extremes of neurological conditions. Stick to the MS Trust and MS Society web sites, its very easy to get really scared, something a lot of us here know all about! Right now you need to think about yourself and concentrate on avoiding overdoing things. Difficult right now, I know but it is important. Most people find that as they learn more about the problems and learn how to live with conditions like MS then some of the symptoms may ease and sometimes, particular in Remitting Relapsing MS ( RRMS) may disappear. MS itself has a huge range of symptoms and different types and we are all affected in different ways. It is certainly not the end of the world, but it does often take a long time to understand your own situation.

Once diagnosed with MS people have access to the MS Nurse in their area. These people often provide the best support and will advise on different drugs to help with symptoms.

 

Anyway I hope this has been some help, you are not alone here and there can be some really good advice to be had here.

 

Nick


Edited by Nick
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Just another Warrior...........

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Scully

Hello Lolly,

 

Nick has pretty much said it all, on that MS is hard to diagnose without all the specific tests they need to do.

 

Do not frighten yourself with 'Dr. Google ' and self diagnosing with all sorts of nightmares. I think we've all done it at some point.

 

It's pointless worrying about something that may never happen.

 

When I was undergoing tests, I had a full brain and spine MRI, they scan the spine as some MS lesions can be in the spinal cord as well as the brain. It's routine.

I was told that if the MRI didn't show anything 'structural' they would proceed to the Lumbar puncture...didn't mean a thing to me at the time. So, MRI done and the consultant bounded in and said 'well the good news is there is no sign of a brain tumour'....I hadn't even considered that possibility luckily. Lumbar puncture preformed, I was diagnosed with Primary progressive MS..and that was that.

 

Symptoms vary vastly from patients to patient. Nerve damage, which is essentially what MS does, can affect all parts of the body, in all sorts of ways.

 

Unfortunately we just have to wait out all the tests, let the consultants do the worrying and see what they say.

 

Definitely only stick to the trusted MS official sites. As, for the rest of the web, well, anybody can write anything on the internet these days, most of its fiction, old wives tales and myth.

 

Stay around here with us, whatever the diagnosis is, then we are here to help you by drawing on our own knowledge and experiences with this weird condition.

 

Do ask as many questions as you want to, even if they sound a bit mad to you. We will do our best to try and answer them.

 

Scully


Edited by Scully
  • Like 1

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

 

"The truth is out there"

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LollyW

Thank you so much for your replies Nick and Scully. The info you have given is really helpful and much appreciated.

 

I'm pleased to say I've had a good couple of days over easter where my symptoms have been pretty light. I have doubled my Gabapentin in take so maybe that is playing a part in it.

 

I have my MRIon my spine this coming weekend so fingers crossed my Neurologist will be in touch a few days later with an update.

 

I have a suspicion that they may see something on my spine MRI, purely based on the strange sensation I have there constantly. If they don't however, I'm guessing lumbar puncture next. What other tests are they likely to do?

 

I think the waiting is the worst part but I now understand how complex this stuff is and appreciate a diagnosis may take time.

 

Thanks again for the info.

 

Lolly

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Nick

The main tests as are mentioned, i.e. MRI and lumber puncture, they may also do 'evoked potentials' test see here:

https://www.mstrust.org.uk/a-z/evoked-potentials

 

Nick


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

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Scully

Hello Lolly,

 

Yup, the waiting is definitely the hardest thing to cope with.

When I look back and see others struggling with the wait, I do wonder how on Earth I got through it. I was just over a year before they finally agreed. Some cases take way longer, but most can show up fairly quickly after some initial testing.

It's just the complexity and the fact that's it different in all of us.

 

I read on here once that a neurologist had said "MS patients are like snowflakes, there are no two of you the same"

We all have the same condition, but it affects us all in many different ways. It's really important never to try to compare symptoms against others with MS.

 

Evoked potential testing is fairly routine also. There are various kinds of these as well...

It can involve being wired up to leads from your arms and legs....and then sorta being plugged in to the national grid..I jest..not as scary as it sounds, but they get a print out of where the signals ar going awry. For example, my left leg signal was absent....made sense since I couldn't feel most of it.

 

VIsual Evoked Potentials....same thing, they wire your head up and sit you in front of a TV screen with alternating checker boards...then compare each eye to see if they match up....mine didn't match up either...although I'd had very few visually disturbances.

 

Again. DO NOT Listen to horror stories about either Lumbar Punctures nor Ecoked Potentials.

Very, very few people suffer undergoing these tests, bar a bit of discomfort. Keep an open mind and just relax. They are fine, really.

 

Scully


Edited by Scully

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

 

"The truth is out there"

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LollyW

Thank you both again for your replies. They are both informative and offer comfort in knowing I'm not alone with all this.

 

Yesterday I heard back from my neurologist's secretary. They have offered me an appointment next Friday, which works out well as I have my spine MRI this Sunday so we should be able to discuss the results at my appointment.

 

Quick question about the spine MRI, I believe they are scanning my whole spinal column. Any idea how long that will take and will my head be in the tunnel throughout the scan?

 

My legs have been particularly bad this week. Gradually feeling weaker as the day goes on then aching like mad at night time. I find some relief with light massage but I'd say co-codamol certainly helps too! My ankles feel very stiff and I have to keep flexing my feet for relief. I have been really irritable and sometimes I let the smallest thing take over my stress levels and end up shouting at my loved ones. I really don't mean to. Just finding it quite hard at times.

 

Another symptom I've noticed these last few nights is the feeling my throat is closing up. It's quite a burden when I'm trying to sleep and I haven't had anything like that before. It has often been accompanied by sharp twinges in my chest but not always.

 

Today I have woken up with tonsillitis :-( second time in a few months. Thinking I'm perhaps run down with everything going on and the lack of sleep etc. I'm not sure if a condition like MS can make you more susceptible to picking infections and viruses up or not? Maybe my immune system isn't as effective?

 

I have read about people having to wait up to 2 years for a diagnosis so I'm trying my best to remain open minded. It just all seems so bizarre doesn't it with the symptoms but the complexity of it all requires time and patience. You never know, my spine MRI may offer some more clues.

 

Thanks again for the replies and for listening :-)

 

Lolly

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Scully

Morning Lolly,

 

You poor thing. Leg pain is something that I suffer from, always have. I used to be on Gabapentin and it worked for years, but eventually, I'd got to almost the top of the dose, so switched to Pregabalin. I also take Baclofen, which is a muscle relaxant.

Both these drugs make me sleepy to a degree, which is great at night time, but so so great during the day.

 

MRI of spine - from memory, it's about 30-45 minutes. I had the brain and spine all done at the same time, also with and then without contrast, which is a drug they can inject which highlights various things during the MRI.

Therefore they scan you, pull you out of the scanner, inject into your arm, and shove you back in. It's not painful.

 

Yes you will go in the scanner head first. You know it's noisy, as you've had your brain scanned already ? For me, the scanner 'tube' never bothered me, in fact I fell asleep during the process, only to be woken up by the technician, as they thought something was wrong!

I found that by closing my eyes, and making my mind drift off to nice things, I could relax easily. Also telling myself that it's a routine procedure, non invasive and very safe, if a little noisy and cold.

 

You can have a CD playing through the headphones at some scanning centres.

 

Short tempered - yup, lack of sleep and stress will do that. At some point, try to explain to your nearest and dearest that you really aren't cross at them, you just don't feel well. It goes a long way.

 

Not sure I've heard that you can pick things up more easily? But if you are a bit down and stressed out maybe? Feeling that your throats is closing can be a classic sign of stress in itself.

 

Sorry about the tonsillitis, hope that clears up soon.

 

Great that you have the MRI at the weekend, and see the neurologist on Friday, hopefully you will get some answers sooner rather than later. Sounds like you are in good hands, and they aren't wasting time in getting to the bottom of all this. It's a real bonus during this dreadful time.

 

Scully

 

  • Like 2

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

 

"The truth is out there"

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Nick

Hi Lolly,

 

A full scan of both brain and spine takes about 45 minutes. So it should be a bit less than that, say around 30 minutes. I've had these quite a few times and it's really not to bad. My own initial diagnosis was done and dusted in around two months, so you can see the difference for different people. You also have to understand that simply having a 'diagnosis' is really just part of the process of being able to understand your own MS, its an ongoing process. My own opinion on my own MS is that it is very suceptible to stress. At the point of my own diagnosis I was extremely over stressed without fully realising it. It's an ironic fact that just at the point when you are most worried (prior to diagnosis) is just when you need to remove yourself from that very thing! All of us, MS or not, should be aware that stress brings on a lack of ability to deal with common conditions like colds and flu.

 

So what can I say, give yourself a big hug and tell people that just at the moment you need to not take on too much. By the way do make short notes about both symptoms and concerns and take a condensed version along to your appointment with the neurologist, the more she knows the more she will be able to help. Neurology and neurologists are amazing people and when i was first being investigated I failed to realise just how much information they can glean from a few simple tests.

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

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LollyW

Thanks for your posts.

 

I'm getting a bit anxious about my spine MRI tomorrow. I have read on another forum about taking a sedative before the scan. Is this still an option for me or should I have requested it sooner to my gp?

 

Lolly

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Scully

Hello Lolly,

 

The spine MRI shouldn't be any different from your brain MRI, just takes a little longer is all.

I've not gone down the sedative route so I can't really offer any advice, but I think others have had sedatives from the GP?

 

Just try and relax. I found it easier to close my eyes and listen to music during the exam. Take you favourite CD with you, most centres offer the music option via the headphones they put on you.

 

Am sure you will be fine, we will be thinking of you. Let us know how you get on?

 

Scully

 


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

 

"The truth is out there"

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Nick

Lolly,

 

I agree with Scully, there is no difference between the brain and spine MRI, It sounds a long time but I find that as they do the different 'scans' , each one not taking very long, the technical person, talks to let you know what is happening and the time goes pretty quickly. As Scully says many centres let you put music on while its all going on. The MRI people are experts as dealing with things if you are nervous, so simply let them know about your concerns. Go luck for today.

 

Nick

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

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LollyW

Thanks guys. Always so informative and reassuring :-)

 

I am silly sometimes. I think I have over thought it and got myself into a bit of a panic because I struggled with the confined space with my brain MRI. I also had a bad panic attack recently because of the severity of my head burn and dizziness. I'm afraid I will have a bit of a melt down in the tunnel. Thinking I might ask if I can wear a blindfold or place something loosely over my eyes. Think I'd prefer that.

 

Anyway I will let you know how it goes.

 

Hope you're enjoying the weekend.

 

Lolly

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LollyW

So... MRIon spine done and dusted. Took around 40 minutes. I was quite surprised when I got there to find a mobile MRI scanner unit outside the clinic. The staff were very friendly and reassuring and even provided an eye mask so I could comfortably close my eyes. I was so relieved when it was done. All in all it wasn't too bad. I think the first 5 mins are the worst.

 

Now the anxious wait for the results. Radiographer said it could be a couple of days or it could be a couple of weeks before results are back. Depends on how quickly they have been requested by whoever sent you for the scan I think? I'm seeing my Neurologist on Friday so I'm hoping my results will be in by then. Might get a better idea as to what's happening and why in a few days time. Fingers crossed.

 

Thanks for listening (or reading should I say!!)

 

Lolly

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Scully

Morning Lolly,

 

So pleased it went as well as it could have.

 

If the MRI hasn't been technically reviewed I think the Neurologist may well have access to it, so may be able to draw some conclusions for you.

 

Try and relax now till Friday, easier said than done I know, but there is nothing to be gained by stressing, as your u won't know anything till then anyway.

 

Have you got someone to go with you on Friday?

 

Scully

 


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

 

"The truth is out there"

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LollyW

Morning Scully,

 

Yeah that's it. No point fretting. I keep telling myself we will hopefully find out a bit more on Friday but don't expect a conclusive diagnosis. If I get one then it's a bonus, at least then I can get the right help and treatment etc. My husband will be with me at my appointment. Just as well as I forget half of what's said as I get a bit flustered.

 

When I first saw my Neurologist he suspected that I am suffering from Functional Neurological Symptom Disorder (FNsD), which means my brain is fine structurally but it doesn't function correctly and for some reason my brain is triggering these symptoms. A bit of an unexplained disorder I think and the treatment for that is CBT and tablets to ease the symptoms. He also said he thinks my brain MRI will come back clear, he said he doesn't think I have MS and sent me for a brain scan to rule it out.

 

However, my brain scan obviously came back with an area of signal change so he changed his mind to 'MS is in consideration'. Then he went on annual leave. Whilst he was away my symptoms in my spine worsened and my legs grew weaker so I went to see my GP. He wasn't happy for me to wait until my Neurologist was back so he called the on-call Neurologist at my local hospital. It was him that sent me for my spine MRI yesterday and he said his initial thoughts are MS (as did my GP). I'm not sure if my own neurologist even knows I had the spine MRI.

 

So a little bit conflicting. Hoping my spine MRI results will give us a better idea. If they don't, I'm wondering if my Neurologist will order more tests or if he will just put my symptoms down to FNsD. I think I would rather have more tests given that a different neurologist and my GP suspect MS. Not long to find out!

 

Lolly

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Nick

Hi Lolly,

 

Glad it all went OK. Sounds like you are having lots of support from your GP. It all helps but there can sometimes be a bit of a 'lag' in communications between hospitals and GP's. Don't worry all this will sort itself out and you can now see just how complex these decisions on 'diagnosis' can be. As Scully says, try not to stress, the answers are coming.

 

Nick


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

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LollyW

Thanks Nick :-)

 

I'm actually seeing my gp on Wednesday morning as I'm currently signed off work. Certificate ends on Wednesday and I'm due to go back to work, but I'm not sure I feel ready. My boss has been really supportive and said take as much time as I need and to please consider coming back at reduced hours. I'll have to discuss this with my gp on Wednesday. Thankfully the antibiotics seem to have finally kicked in so the tonsillitis is getting better. The burning sensation in my head and body is still quite strong at times which is putting me off going back to work. As is the worry of not knowing what's wrong with me. Not sure what to do.

 

I'm guessing I can check with my gp on Wednesday if my MRI results are back in preparation for the Neurologist on Friday.

 

Lolly

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Nick

It's great that you have a supportive boss!! It's good advice to take as much time as you need. We can't stress enough about how being stressed out is bad for neurological conditions. It is also good that you have a GP who simply has time for you!!

 

Don't rush, it all takes time.

 

Nick


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

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LollyW

Morning,

 

Just got back from my gp appointment. He has signed me off work for a couple more weeks with 'Demyelination likely' stated on my sick note. He's told me to double up on my Gabapentin with immediate affect to help ease my symptoms and then see my Neurologist as planned on Friday. In his opinion, this is just the beginning of the process for getting the right treatment and getting my symptoms under control.

 

My MRI spine scan results were back from radiologist but not yet reported on by my Neurologist. He said they've found lesions on my cervical spine but didn't have any more details as of yet. In his opinion the fact I have lesions on both my brain and spine would be conclusive enough for a diagnosis of MS. But he is a gp so obviously can't diagnose my condition.

 

I'm seeing my Neurologist Friday. Do you think he's likely to perform more tests? Has anyone else had lesions on both brain and spine prior to diagnose? I'm finding it difficult to process the whole situation. Maybe I will get my diagnosis on Friday after all.

 

Nervous and worried :-(

 

Lolly

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Nick

Hi Lolly,

 

I can only say that there are a few of us here who are thinking about you and remembering our own difficult times. This is a tough period, however it seems to me that both your GP and neurologist are doing their very best. I can't easily answer your question about lesions, in my own case I now know I had MS for at least ten years before actually getting a diagnosis. I had an early episode of optic neuritis and at that time had a scan, but never really knew about results in detail. In any case the technical details are not as useful as the proposals of possible treatments and in starting to understand just where your problems lie.

Some of the very best advice I got early on came from other people with MS. This support and knowledge coming, as it were, from the 'experts' us, that is, proved invaluable. it's exactly why this forum exists! (Thanks Marina) Don't underestimate the power of that kind of 'treatment'. I can tell you that I got into a terrible muddle over the impact of what it might mean to have something called MS, I didn't even understand really what that meant! Of course you are worried and nervous, I know I was! The answers did come and my life has changed and learning to live with MS took a long time but most of the scary thoughts of what might be, turned out to be completely different from the reality. So hang on in there and we all hope you get some more answers on Friday.

 

Nick

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LollyW

Thanks so much for your supportive words nick. I can say without any doubt I have found this forum both informative and comforting knowing I'm not alone.

 

My brain feels frazzled and anxiety has set in in fear of tomorrow's visit to the neurologist. My sister, who has accompanied me to my GP appointments, is composing a list of questions for me to take with me to my appointment. Hopefully I'll be able to get my head around what's happening, once I have some answers.

 

I'll keep you posted.

 

Lolly :-)

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Scully

Good luck today Lolly,

 

Just remember. Even when an MS diagnosis is 'expected' it can still come s a real shock. So be prepared.

I was expecting my diagnosis, but as my neurologist showed me the MRI 'etc...and said ' this is MS'.....I still couldn't quite take it in.

He asked me if I had any questions....my reply....'probably a million of them, but I can't think of one'.

 

Re - more tests. They no longer perform Lumbar punctures as routine if the diagnosis is certain. It may be a case that in order to determine 'which type of MS you may have' ( there are 4 ) he may suggest something.

 

Remember also. The diagnosis changes nothing. MS isn't life threatening, and all patients are different in how the condition affects them.

 

IF you are diagnosed then there ar some things you must do.

Ask for an immediate referral to your Local MS Nurse. These nurses only see MS patients and specialise in all things related to the condition.

There are a couple of legal requirements, like the DVLA and you car insurers. But don't get bogged down in all that just yet.

 

Whatever the diagnosis. We can help you with all that when you are ready of course.

 

Good luck Lolly, and let us know how you get on. We are here to help, support and encourage, whatever your Neuro says.

 

Scully

 

 

 

 


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

 

"The truth is out there"

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LollyW

Thank you so much for your kind words and advice. It really helps :-)

 

Will return later with an update.

 

Lolly

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LollyW

Hi guys,

 

Following on from my appointment this morning, we are unfortunately no closer to a diagnosis. He said the abnormalities on both my brain and spine MRIs and my current symptoms aren't conclusive enough for a formal diagnosis.

 

He is sending me for the following tests:

Lumbar puncture

Evoked potential studies

Evoked sensory studies

Blood tests (ANA)

 

He said hopefully once all the tests are done and results are in we will get a diagnosis. Realistically this is likely to take 2-3 months, maybe more. He's told me to remain open minded, as nothing can be ruled out at this stage.

 

He has advised me to increase my Gabapentin gradually up to 900mg 3 x per day over the next 6 weeks as the dose I am currently on is too low. He is also prescribing something along side this to help with the drowsy side effects of the Gabapentin. Not sure what to do about work. I'm signed off until the 10th may. Wondering if I might be too drowsy to drive and concentrate at work?

 

Not nice being in limbo land but grateful they are doing all the right tests.

 

Lolly

 

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