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LollyW

Help! Anyone else have these symptoms?

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Nick

Good advice from the neurologist to stay open minded, that is exactly right. Clearly everyone is on your case and that is also brilliant, what is not so great is the prolonged waiting.

However this can't really be avoided and again I must stress that now is the right time to 'back off' and allow yourself some space. We all live busy lives and your worries over work and driving MUST come secondary to simply looking after yourself. Not easy for anyone I know but you simply need to do it. Do that and follow the medical advice and see how it goes. As Scully says, whatever happens I am sure people here are only too keen to give you more support.

 

Nick


Edited by Nick

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

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Scully

Hello Lolly,

 

Well, it's not really unexpected that he has ordered more tests.

When an MRI is inconclusive and doesn't quite fit with the symptoms it's a normal process to go down the LP and EVP tests to try and pin a diagnosis down.

The blood work, including ANA is for other conditions like Lupus. It's important to rule things out and see what's left, basically.

 

With regards to increasing the Gabapentin. I've had lots of experience with Gabapentin, and for the first 10 days or so on the higher dose you will feel sleepy and drowsy. It's a side effect that WILL wear off, so it's important to stick with the increase. You may be over the side effects by May 10th, or possibly you can return to work on either reduced hours or light duties. It may be worth going in to see your employer and having an informal chat about this in advance.

 

No need to go into loadsa detail, enough to say you are undergoing tests and the medication could make you a little drowsy.

 

Totally agree with Nick. Try and just get in with life as best you can. And Please, please, do not listen to horror stories regarding the LP...it seemed everyone I spoke to had a horror story and it just isn't true so , don't fret over that sweetie.

 

We are here, if you just want to rant or ask daft questions....as has been said, been there, done that etc..

 

Scully


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

 

"The truth is out there"

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LollyW

Hi guys,

 

I am arranging to see my boss next week, before ny current certificate expires. In all honesty I don't feel ready to go back to work yet. Knowing I have to wait for 2-3 months before seeing my Neurologist again and undergoing various tests is a scary concept.

 

I'm still having better days than others so I don't want to comitt to going back only to call in and say I'm not up to going in again. Haven't yet got control of my symptoms so it's hard to anticipate what tomorrow will bring.

 

Today I have the horrible buzzing/internal itching sensation at the base of my spine. Can't get rid of it. It also feels sore to touch which is new. Any ideas why this might be happening and how I can relieve it? I'm up to 900mg of Gabapentin a day now and I think it's helping my achy legs. Still getting the burning sensation on and off but nothing I can't handle. Will be increasing to 1800mg in 10 days then 2700mg 2 weeks after that.

 

Last night I noticed vibrating in my left foot. I often get twitches but the vibrating is new. Anyone else had this?

 

Thanks for listening as always :-)

 

Lolly

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Nick

It's a tricky situation for you, yet it's clear that you are already looking for solutions, which is a very positive sign.

All our past histories are different, but when I was in a similar situation I did keep my employer informed, along with everyone else. This is not something everyone wants to do (which is fine) but for me it was a very good policy.

Somebody at work once asked me why I had not done something, my reply, that I had been 'thinking about it', was met by the memorable retort that, 'if you where thinking about it, why didn't you do it' That is good advice for you. If you say that you don't feel ready for work, then you should allow yourself some more time off work.

Gabapentin takes a lot of getting used too and you will have to wait and see just how it works for you. The only symptoms I get which correspond to yours are twitches and spasms. I am prescribed Baclofen for this. I used to take Gabapentin but have now changed over to Pregabalin. I was OK and perfectly tolerant to Gabapentin, but was advised to change over to Pregabalin.

All this is really about trying to find out what is effective for you, and you have to be guided by your GP and neurologist. It is one of those things where you end up helping yourself, as you, yourself become more knowledgeable. A rather nebulous way of putting things, but neurological conditions are completely different to situations where you are being prescribed a drug to overcome a disease. The drugs we are talking about here are simply to releive a symptom.

The brain being such a complex bit of kit, it means that we are all different.

 

Hope that helps.

 

Nick


Edited by Nick

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

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Scully

Hello Lolly,

 

Ok. You are not legally liable to talk to or even inform your employer of your condition, confirmed as MS or not.

 

However, ( you knew there would be a 'but' coming huh? ) it makes sense to sit down with the employer and explain the problems you are having. 1) so the employer understands that you have real problems. 2) that you are willing to be open about it, and 3) to ease the pressure and stress of yourself...in other words, prevent your own concern and worries, hence relieving your stress.

 

You are covered by the Discrimination Act. And therefore should not be penalised for having time off ( legal head on now )

 

Keep it simple. Stick to facts. For example. You are being investigated for a neurological condition, but, as yet, you are still undergoing a range of tests. And, you are getting used to some fairly hefty medication to treat your symptoms,

 

I tolerated Gabapentin for many years and reached the top dose. I also switched to Pregabalin when Gabapentin didn't seem as effective, but this was after many years. My GP and I got pretty good with Gabapentin, inasmuch as I could increase or lower the dose.

For example, let's say I was stable with symptoms for a few days, then, I had s day out, suffered for it the following day, so I'd take a few exptra Gabapentin till it was under control, then reduce it again. But this was after a few years of playing around with the dosage, until we found the optimum of keeping the symptoms at bay.

 

As Nick says we are all different

 

If, as you say, you aren't ready to go back yet, then follow your gut instinct and say so. It's a sensible approach to explain that if you were to come back now, it may be that if you have a bad day with symptoms or medication issues, you would need a day off.

 

See the GP to renew your certificate.

 

The nerves are effected anywhere in the body, which can cause, burning, itching, muscle spasm ( which feel like cramp ) and yes, a strange vibration feeling, pretty much anywhere.

 

I get vibrating feet and vibrating hands. Muscle spasms, and horrible burning sensation on the skin, which feels a bit like sunburn.

The burning is often when I'm tired of I've done too much for whatever reason.

 

Talk to your family as well. Can you manage without the wage, or is this going to cause more stress?

 

It's all a question, as in everyday life, of balance....Balance life, work, symptoms, and medication.....we get pretty good at juggling !

 

Scully

 

 

 

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

 

"The truth is out there"

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Marina

Lolly, about the vibrations... There are “tremors”, which we can see, such as a shaky hand, however slight it may be. And there are “internal tremors”, which can’t be seen no matter how strong it feels, and which can’t be felt if someone puts their hand on you, and which many describe as “vibrations”.

 

There are so many descriptions for it, such as having lots of mobile phones vibrating inside you, shivering or trembling inside, a million bees buzzing around, a rumbling earthquake, bubbling, fizzing, and so on. These vibrations can be from mild to quite strong.

 

I get these inner vibrations, quite badly. In my feet, legs and abdomen. Drives me potty. When I have it in my abdomen, it can sometimes feel as if it’s sort of pulsing, a bit like palpitations when it’s not, and it’s really most unpleasant.

 

Treatment can be the usual for neuropathic pain: amitriptyline, gabapentin, pregabalin, clonazepam. I can’t take any of those except for clonazepam, due to side-effects. I’ve also found that Tegretol (carbamazepine), which I take and was initially given to me for TN (trigeminal neuralgia), helps too. I find that if I don’t take the Tegretol, the vibrations return with a vengeance. I’ve even found that Propranolol can help!

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Marina

(belated DX in June '05, SPMS)

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LollyW

Thanks for the replies everyone :-)

 

Thanks for the info Marina. I didn't realise that what I was describing is a tremor. Fortunately I've barely had it since I mentioned it on here. Maybe the Gabapentin is kicking in now I've increased the dose. I'm not really feeling any side effects from the Gabapentin increase. A bit spaced out perhaps at most. Although I will be doubling my dose shortly then doubling again 2 weeks later.

 

I popped in to work earlier this week and my employer is being so supportive. I have decided to go back on a 2 week trial where I can literally come and go as I please in that 2 weeks and see how I get on. Money's not an issue and I have no worries regarding job stability so I feel a big weight has been lifted. I only usually work Monday to Wednesday anyway so it's only 3 days per week. If my 2 week trial works out and I feel I am coping, then I will return to work on reduced hours. If the trial doesn't work well and I find it too much, I will have to take time off. Will be nice to have a bit of normality back in my life whilst waiting tests and diagnosis.

 

I've actually felt pretty ok this week. Hoping it works out next week. I'm anxiously awaiting appointments for all my tests. Taking my mind off everything would be great.

 

Hope you're all ok.

 

Lolly :-)

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LollyW

Evening all,

 

Sorry me again.

 

Just a quick question, has anyone experienced weight gain as a side effect of Gabapentin? I seem to be gaining lbs but my diet hasn't really changed.

 

Thanks

 

Lolly :-)

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Scully

Hello Lolly,

 

Am pleased that you have had a good discussion with your employer. You are both aware of what's going on so it helps.

 

Sounds like a good plan you have hatched between you without the added pressure on you. As well as occupying your mind.

 

The Gabapentin may well be helping you out with various symptoms. I think weight gain is unfortunately a side effect, although I didn't notice it. I have gained weight on the Pregabalin however.

 

Don't get hung up on the impending tests. Honestly, there really isn't anything to fear from them.

 

Scully

 


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

 

"The truth is out there"

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Marina

I have heard of MSers gaining weight with gabapentin. Here’s one of several topics mentioning it on this forum:

http://ms-people.com/forum/topic/15055-weight-gain-with-gabapentin/

 

I took gabapentin for a few weeks quite a few years ago and don’t remember putting on weight with it. I was on a very low dose though.

 

But I did put on weight with pregabalin, 6lbs in one week alone, the first week!

 

Due to side effects, I can’t take either of these drugs.

 

It's great that your employer is so supportive and understanding. That side of things must be a relief for you.


Marina

(belated DX in June '05, SPMS)

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LollyW

Thank you for the replies :-)

 

Shame Gabapentin didn't work for you Marina. My burning sensations have really calmed down since I increased the dose. I noted on one of your posts Scully, you compared the burning sensation to sunburn. That's exactly how it feels for me especially when it flares up across the top of my back. I've noticed stress can definitely bring it on.

 

With regards to the weight gain, the fact that I've been off work for a month may be a contributory factor. Perhaps eating more and not so active. I'm going to start using MyFitnessPal again from tomorrow so I can watch what I eat.

 

The only symptoms I've had the last few days are achy legs and lower back ache. So fingers crossed my return to work on Wednesday will go smoothly. I'm not sure if increasing my Gabapentin again will ease the back and leg aches??

 

I haven't had anything through the post yet regarding my tests. I'm just trying not to think about it for now. Neurologist said tests should be done and dusted and results back in the next 2-3 months. It's gonna feel like forever!!

 

Hope you're enjoying the weekend.

 

Lolly :-)

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LollyW

Hello,

 

Just wondering if anyone suffers from a buzzing sensation in the base of the spine, really achy legs, aching feet and stiff ankles and if you have any advice on how to ease any of these symptoms? Any medication or suggestions.

 

Like I said before, the Gabapentin appears to be helping with my burning sensations, they do appear from time to time but not like they were before. But it doesn't seem to be touching the spine, leg, feet and ankle symptoms.

 

Any advice or suggestions would be great.

 

Thanks.

 

Lolly :-)

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Scully

Hello Lolly,

 

I get some of those symptoms you mention, Gabapentin may help more as you increase the dosage.

 

Lots of us suffer with chronic pain. I get really achey legs and a sort of spongey feeling in my feet. Stiff ankles may be due to lots of things. Gentle, regular stretches also go a long way to help.

 

See this link that discusses lots of pain issues in MS. Which is freely available to either read online or download

https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Pain-The-Basic-Facts.pdf

 

Hope it helps.

 

Scully

 

 

 

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

 

"The truth is out there"

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Marina

Lolly, does the buzzing at the base of your spine occur when you bend your head forward so that your chin touches your chest? If so, that's what they call "L'Hermittes sign":

https://www.mstrust.org.uk/a-z/lhermittes-sign

 

Really achy legs, I have that too. It was one of my first symptoms when they initially thought I had ME.

 

Aching feet, mine burn all the time and can also often feel like I'm walking on pebbles or tiny grains of sand, and I can get buzzing in them too.

 

There's also this link on the many types of pain we can get, from the MS Trust:

https://www.mstrust.org.uk/a-z/pain

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Marina

(belated DX in June '05, SPMS)

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LollyW

Thank you both for the informative replies.

 

The "buzzing" sensation at the bottom of my spine I described to my Neurologist as an irritating sensation, feels like an itch I can't scratch. Makes me want to grit my teeth at times. He then wrote "buzzing sensation" in my notes. I've read about L'Hermittes and I don't think it's that as it doesn't just happen when I put my head down for my chin to touch my chest, nor does doing this intensify the sensation. My Neurologist also tested me for that on my last visit.

 

The sensation at the base of my spine can flare up at anytime and can be mild or severe. I've noticed driving can trigger it as can being on my feet for too long or sitting at my desk for too long. It is almost always accompanied by aching legs and, as the day goes on, aching feet and stiff ankles.

 

I have started taking co-codamol in the evenings, once the kids are in bed as by the evening I am struggling to cope with the discomfort. It helps take the edge off. The trouble is I then feel drowsy in the morning so it's a struggle to get up for the school run. I also have a 2 year old to look after so taking it in the daytime isn't an option.

 

I am hoping the Gabapentin will start helping my spine, legs and feet when I increase the dose again. On days when these aches are bad I've also noticed twitches in my legs, feet and toes. It's like my nerves are having a party when I'm laying in bed resting. Not painful, just prominent.

 

My mum is lending me her foot spa so I could try using that for some relief.

 

I have some blood tests booked in for Monday. There's one ticked off the list. Awaiting appointments for the other tests.

 

Thanks so much for listening. Sorry if I come across as whinging. I know I'm certainly not the only one suffering and I really appreciate your advice and support.

 

Lolly :-)

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LollyW

Lumbar puncture appointment is booked, 31st May. Eeek!!!!

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LollyW

Has anyone ever taken Diazepam for aching legs? I'm currently on Gabapentin and have been advised it's safe to take both together.

 

Lolly :-)

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LollyW

Morning,

 

Sorry another question. Neither my husband nor I have any form of life insurance and we took out a mortgage last year. Thinking now we should do it quick before I get a diagnosis.

 

Any advice on this would be much appreciated.

 

Thanks guys.

 

Lolly :-)

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Scully

Hello Lolly,

 

Never taken diazepam, even when pain was really rough, just didn't fancy the hardcore stuff to be honest.

 

Don't worry about the L.P. It's a straightforward procedure. Just a tip, tried and tested. Before the LP drink s much coke-a-cola as you can. And also drink lots after...the full on variety, not the sugar or caffeine free stuff...following an LP , because they remove a small amount of fluid from the spinal column, you MAY get the LP headache...for some reason, drinking the coke seems to stop that, by somehow helping to restore the balance. You need to make sure you can rest as flat as possible for at least 24 hours after, so clear your schedule. Other than that tip, just go wth it.

 

Life insurance - MS doesn't shorten your life, but may decrease your earning capability. However, even if you apply for life insurance now you will have to say that you are under investigation, if you don't, and you are subsequently diagnosed with something, the policy will invalidate.

If you were to be diagnosed, the insurance company will seek your medical records which will clearly reveal the suspicion of MS when you took out the policy.

I think there is a specific question on most applications that ask if you are under the care of a consultant or undergoing tests etc..

 

If you are diagnosed with MS, there are insurance companies that specialise in cover for anyone diagnosed with a disability or diagnosis.

There are many links and discussion on here. Just put 'insurance' into the search box on here. I will try to find some links for you as well.

 

Hope this helps

 

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 Scully. Good for you, your pain threshold must be a lot greater than mine. I'll stick to the co-codamol for now in the evenings. It takes the edge off. It's more the constant nagging that's so frustrating, not just the pain and discomfort.

 

I'll look into the insurance. By all means I will be honest with our application. My friends are surprised we didn't have to have a policy in place to take out a mortgage. I'll look into this first. My husband deals with all this stuff so I'm a little bit ignorant to it all. Maybe we should wait until I'm diagnosed if we don't already have a policy in place.

 

Thank you for the tips regarding LP. I've read about the horrible headache. Think I'm dreading that more than the actual procedure to be honest. So hopefully I'll avoid it. Don't really like coke (only diet version) but I'll get guzzling beforehand.

 

Enjoy the weekend.

 

Lolly :-)

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Scully

The nagging, constant dull aching is just the pits isn't it.

There are some things out there.

Amatriptyline, just taken at night time, or more correctly, 12 hours befor you plan to get up to avoid the 'hung over feeling'

 

For a while, at the beginning, I used pain patches. Stick them on every couple of days or so, but developed an allergy to buprenorphine, which is a deriritive of morphine. I guess it's for that reason I've tried to stay off the hard stuff as it were!

 

But hey, if a low dose diazepam works for you to get through the evenings and night, then go with it

 

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 Scully. Were the pain patches prescribed or could you buy them over the counter?

 

I've not heard of these before. Did you find them effective before you became allergic?

 

Thanks.

 

Lolly :-)

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Scully

Hello Lolly,

 

You do need them prescribed. Most pain stuff that is bought over the counter isn't very effective unfortunately.

 

There a several different types. The ones I had needed changing about every 4 days, and you said I've them on a different area each day. From memory they are stuck onto the torso, where the medication is absorbed into the skin and thus into the system.

 

I think the ones I had were called 'Salonpas' which I think are available on Amazon, but they don't contain the burenorphine so wouldn't be much use! Ask your GP about trying them perhaps ?

 

They did work, until I developed the allergy.

 

Scully


Edited by Scully

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

 

"The truth is out there"

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LollyW

Thanks Scully. Defo worth a try I think.

 

Thanks for the info.

 

Lolly :-)

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LollyW

Hey,

 

Hope everyone is ok.

 

Quick question for anyone that suffers from burning sensations, do stress and/or anxiety make the burning sensations flare up? I noticed when I was under a bit of pressure at work today my head and arms started burning. Feeling anxious tonight and my chest and tummy are burning. When I say burning, my skin is completely normal visually and to touch. It's inside.

 

Anyone else had something similar?

 

Thanks

 

Lolly :-)

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