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Dx last month,Neuro says benign,nurse says rrms ?

Hi all,heads in a spin,hope someone can shed some light,after years of symptoms i at last know what’s wrong with me,not the answer I wanted but at least now I know(what I’ve allways known) that I’ve got MS,…it still hit me like a ton of bricks but at least now I can concentrate on dealing with it rather than what if its this,what if its that etc… I was pretty lucky to have a call from an MS nurse within a week to arrange a meeting…so I met her last week and went through all m symptoms etc and she seems to think I have rrms,but when I asked my Neuro what type i have on the day of Dx he just said ‘its MS,and its benign,you must notify DVLA’… The trouble I have is I seem to have 2 different dx’s,the other trouble is I live so far from my nurse and Neuro that she agreed straight away that I’m traveling too far and transferred me to a new Neuro and Nurse there and then (which I can’t thank her enough for) so I won’t be seeing either of them again… The other thing is,she says to take Vitamin D3 50001.u. one a day, yep that’s fine,but do you’s think i should have a blood test first to make sure the dose isn’t too high?? She also prescribed ‘PREGABALIN’ which I collected as I was leaving the hospital…so when I got home I opened the bag and started to read the 7 pages of A4 paper that came with it and thought sod them side affects lol, So I’ve not touched them… So do you’s think I should wait to meet my new Neuro and Nurse to 1,confirm what Dx I have before taking any drugs ? (Really didn’t want any drugs tbh) so any experiences with PREGABALIN and Vitamin D3 really appreciated) And does anyone else here go to Queens hospital Romford (this is where ive been refered to,she assured me they have a very good Neuro dept and nurse there?? (Heard some horror stories about that place,just hoping the Neuro dept is ok ? ) Also still waiting to here back from DVLA,sent off all the forms etc and waiting to hear if I lose my HGV licence and my livelyhood and the roof over our heads amongst other things…stress levels through the roof atm :frowning: Sorry to have gone on a bit,and hope you understand what I’m trying to say lol… Regards Fletch

Hi, I take vit d 5,000iu I did get a blood test first which was very low, I did start taking meds at first but I had terrible side affects so after much thought decided to not take anything after 2 half years I feel so much better I follow a strict diet with lots of supplements fingers crossed hope its working.

Sue

Hi Fletch,

I don’t know if it’s just a single neuro who’s always doing it, but this is an increasingly common story on these boards.

There is no such diagnosis as “benign MS” - at least, not as an initial diagnosis. You could have RRMS that’s behaving rather benignly at the moment - which is all well and good - but doesn’t mean you don’t really have “proper” MS, and is unfortunately no guarantee it won’t turn more aggressive in future. I’m not trying to scare you - just getting rather cross with neuros who believe they can predict the future. MS is an unpredictable disease: nobody knows how it’s going to go. I don’t know whether this fashion for labelling it “benign” is an attempt to reassure, but sometimes I think all it does is make the patient feel a wimp if they’re still having symptoms, and as if they shouldn’t really have anything to complain about.

It’s true that the best and only indicator we have of how someone’s MS may progress in the future is how it’s behaved in the past. So your neuro may be basing his assessment on your apparent long history of symptoms, but without anything more drastic ensuing. Technically, it is possible to diagnose benign MS retrospectively after 10-15 years with little or no disability. See here: http://www.mssociety.org.uk/what-is-ms/types-of-ms/benign-ms

But that usually means from initial diagnosis - not taking into account your history before you were ever diagnosed.

The drugs you have been prescribed (Pregabalin) are for symptoms, so if you have symptoms that need addressing, it’s irrelevant whether your MS is “benign” or not. If you don’t have symptoms (pain or discomfort) that need adressing, then obviously it’s questionable why you’ve been prescribed symptom relief, as they won’t do anything to change the course of the disease. Presumably you did relate to the nurse that you’re experiencing some sort of discomfort, and that’s why she’s prescribed the Pregabalin?

I’m not sure it’s correct to think of vitamin D as a drug. It’s just a supplement. It’s estimated most people in the UK are deficient to some extent, with people with MS seeming particularly susceptible. Emerging research suggests it’s likely low vitamin D may be a factor in frequency and severity of relapses, so it’s a good idea for anyone with MS to be on a supplement. It’s quite hard to overdose, although it is possible. There is no clear guidance on the correct dose that should be taken, with advice seeming to vary from neuro to neuro, and a few still not mentioning it at all.

Last year, at the neuro, I mistakenly told him I was taking 1000 I.U. a day, which he said was fine. I was in fact taking 2000! This year, I confessed my mistake, and told him I was really taking 2000, and he said that was fine, too - didn’t advise me to raise or lower it.

I’d be reluctant to go to 5000, but I’ve had a blood test, and found my levels were well above average, according to my GP - but certainly not at danger levels. So I don’t consider I need more to ward off deficiency. Though I sort of get the impression that if I did tell the neuro I was taking 5000, he’s say: “Yeah, alright, fine” to that as well! You do need to bear in mind that NHS guidelines for optimal levels of vitamin D3 are very outdated, and don’t reflect the latest research, so patients may well be told levels are “fine” according to existing guidelines, when the newer research indicates this may be woefully low.

If in doubt, my advice would be to start supplementing - everyone with MS should be - but don’t necessarily go straight for the full 5000. Maybe start at 2000, like I’m on, and talk it over with the new neuro, and/or get a blood test to determine whether you really should be on more.

I have to say, parting company with your old neuro does not sound like a great loss. “It’s benign, you must tell the DVLA” doesn’t sound like a particularly constructive or informative consultation.

Tina

Hi Fletch

Maybe you should wait before taking the medication. I’m not on any meds too because of the side-effects. Although after chatting with nurse last week, she advised me to take meds early on diagnosis to prevent any further damage that “may” occur (although meds aren’t a cure, only slowing down progression, and not guaranteed to work anyway). I’m waiting for new tablet to come on market which slows down progression by 50%, otherwise I’ve decided take Avonex by end of year if tablet is a no-show.

My blood levels were fine after tests but I’ve been advised to take vit D too. Although Nurse said that no one knows if vit D makes a difference, they just tell you to take it because some MS patients have low vit D levels (due to lack of sun or something). I haven’t notified the DVLA because I don’t want my licence taken away. If I have problems driving only then will I make a decision to inform them.

I go to Queen Elizabeth Hospital, Greenwich because the Nuro that diagnosed me under BUPA has a practice there. He’s a nice guy and is currently doing trials for a new MS drug. I’ve been told by another MS sufferer and by my own research on the Internet that the best hospital for MS is The National Hospital for Neurology and Neurosurgery (NHNN), Queen Square - its the UK’s largest dedicated neurological and neurosurgical hospital in London.

So to sum up Fletch - my nuro did say if I have any further sensory symptoms I should take meds immediately. So I guess you can hold off on the meds but if you feel a relapse coming on, you should take maybe them. You can always stop and change if your new nurse prescribes/advises something else. Vit D, not sure about this one - I only take because I was advised to but maybe you should ask for a blood test to check your levels out of curiosity?

And, stop stressing as this is not good at all for MS. When I’m stressed I get shooting, electronic pulses through my legs and head - I call it “disco lights” (yeah!). So try and keep stress to a minimum because this will only aggrivate the MS.

Would be interested to hear what others have to say.

I think there may be problems re HGV Licence.

Agree with Anitra - the term ‘Benign’ is inappropriate - can you imagine telling someone you have benign cancer, diabetes, ulcers etc. ?

Hold on,

Seems to be some confusion here. Not all MS meds are to prevent damage or slow down progression. That only refers to a very special subset of meds called disease modifying drugs (DMDs). Many people with MS are not on DMDs, or even eligible for them. It doesn’t sound as if anything Fletch has been offered so far is a DMD, and based on what he’s said, he might well not qualify anyway.

But, none of that has anything to do with drugs such as Pregabalin, for the treatment of symptoms. If you have symptoms that are adversely affecting quality of life, there is no virtue in seeing how long you can hold out without treating them. Pregabalin does absolutely nothing to ward of relapses, so there would be no point suddenly taking it “only if you feel a relapse coming on”. It’s typically prescribed for nerve pain, so if Fletch does have nerve pain, he should go ahead and try it. With luck, it might result in a bit less daily discomfort.

If, on the other hand, he doesn’t have nerve pain - or doesn’t believe he has - he should question why he’s been prescribed a drug for a problem he doesn’t have. None of this is about stopping relapses, although there’s growing evidence the Vitamin D might be helpful in that respect. But even if it isn’t, we know vitamin D deficiency isn’t good for anyone, and MSers are particularly prone to it, so supplements could be viewed as a kind of insurance policy.

Tina

My neuro advised on between 2000 and 4000iU of vit D3 a day.

P.S. I’m not a driver, so it didn’t affect me, but from everything I’ve read and understood here, telling the DVLA is not optional, depending on how badly you think you’re affected. If you have a confirmed MS diagnosis, it’s the law.

If you have an accident, and it turns out the DVLA weren’t notified, you might find it invalidates your insurance (even if the MS was not the cause).

Few people with MS have their licence permanently revoked. It’s usually just switched to a 3-year one, because of the obvious unpredictability of the disease,

Tina

Hi reading the comments re benign MS are of particular interest to me as I am one of those diagnosed in this way. I recall thinking at the time of diagnosis “Benign much like having a benign tumour something present that wasn’t actively doing harm” I was SO confused because in fact, I felt awful much of he time (still do). I have many symptoms that vary in type and intensity, pain and fatigue I guess are the worst. I have good days and bad days, times when I experience relapses that can go on for weeks, even though I’m not RRMS and since diagnosis I have deteriorated but where the MS remains benign (so far) is in the fact that I am not disabled.

My MS nurse is fantastic and I remember her saying to me “MS is MS” as I was trying to grapple with and understand what my diagnosis actually meant after too often being in the position of having to justify why I felt so ill and debilitated to friends and family.

I have been offered medication dmds but after doing research decided not to go down that root. For myself, I didn’t feel there was enough evidence of their efficacy to convince me that it was worth enduring their side effects.

I have never been one for taking stuff prescribed or otherwise and it took a while to give myself permission to take medication for symptom control. (that was stupid !)

I am not on any permanent meds though I had one year on gabapentin when I had intense unbearable pain and restriction in both my arms. I was persuaded to take the gabapentin by a really good neuro. I had been reluctant to “give in to the MS and relinquish control” He said he respected how I felt but “surely taking the pain relief is you taking control of the MS” I take amitriptyline which helps bladder control at night and helps my sleep pattern re establish itself, when I need to. I wouldn’t take anything ‘just in case’

I do take vitamin D, I’m vegetarian and am almost completely dairy and gluten free. I make my own fresh juice every day.

We as with all people can only live one day at a time.

Tx

I hate to say this but by law you have to inform DVLA that you have MS. See Multiple sclerosis and driving - GOV.UK for details and a link to the form to use.

They may well write to your neuro for details of how your MS affects you but it’s very likely that you’ll get a 3 year renewable licence. I lost a couple of groups but I’m still covered for cars which is what mattered to me. You may be able to carry on driving while they investigate and make their minds up: it’s worth asking them. It took a couple of months for them to process my form, write to my neuro, get his response and write to me saying they would give me a 3 year licence.

Sorry to be the bearer of bad news.

Thank you all so so much for your indepth responces (honestly overwhelmed),I started up my old laptop and thought it best to respond properly a indepth to your points and not from my iPhone like my original post,so started by responding to Sue &Tina…LAPTOP FROZE,when posing reply…launched above mentioned laptop in anger after the time and effort I put into your replies…so here I am on my phone again lol… So,im going to cutbit short betore i launch this aswell lol… i’lll start with the DVLA,I rang them,they sent me the forms,told them of my Neuro,docs/medication etc,and now awaiting there desision… I know about the 3yr licence BUT Its different with a HGV licence (and so it should be) i have to wait for them to write to Neuro,and him to respond… With the HGV,You only get a 1yr licence only to be renewed after a medical every 12 months(at your expense) but,I’ve not even crossed that first hurdle yet HENCE my frustration and stress at this point (still got bills and colossal rent to pay hence me scared of losing my livelyhood and house) I do understand that Vit D3 is a supliment,and not a drug…I just wanted the thumbs up on wether or not to take such a high dose,thanks all for the input on that (bloodtest it is) Got many issues with my (now) old Neuro,and look forward to meeting my new one and new nurse ESP regarding the new medication which I don’t really want to start until I’m ready…ATM my symptoms range from everything from fatigue/spasms/bladder/intense pain in joints/bones then next day GONE,to blurred left eye(had optic neuritis 7/8 years ago but never told anything about it,but now symptoms are back but eye test showed nerve damage due to Ms,but no ACTIVE neuritis(this was only last week) strange I thought as symptoms seem worse now than when it was active… My nurse(what a diamond) was so good,and we chatted for almost an hour and half and one of the first things she said to me was,why are traveling all this way?and arranged to get me refered closer to home ASAP… The only reason I travelled so far in the first place was because of the 4month waiting list,it was that or wait 7/8 months to see a Neuro which was impossible when virtually numb all down my left side,was very worried and needed help and answers my doc couldn’t give… Sorry but I’ll respond to your other coments tomorrow as I’m struggling to keep my eyes open concentrating on this tiny phone lol Goodnight all and thank you so so much for your input so far… I must go bed Regards Fletch xx

Just a point that confused me further early on. New symptoms and had MRI’s to be told the MS wasn’t active at the moment. How can that be? Neuro told me that this was often the case. Ahhhh! too complicated.

By the by, I don’t have MRI’s anymore and haven’t had for two years. I figured that all they do (I may be wrong) is inform where new lesions are ( if there are any), indicate active or not and don’t actually change the overall situation.

I hope your new MS nurse and neuro are a good team for you Fletch. I wish you well. Try to take things steadily and not deal with everything all in one go. You weren’t superman before your diagnosis and probably aren’t now :slight_smile: Tx

[quote=“Mitzi”]

I hate to say this but by law you have to inform DVLA that you have MS. See Multiple sclerosis and driving - GOV.UK for details and a link to the form to use.

They may well write to your neuro for details of how your MS affects you but it’s very likely that you’ll get a 3 year renewable licence. I lost a couple of groups but I’m still covered for cars which is what mattered to me. You may be able to carry on driving while they investigate and make their minds up: it’s worth asking them. It took a couple of months for them to process my form, write to my neuro, get his response and write to me saying they would give me a 3 year licence.

Sorry to be the bearer of bad news.

[/quote] Ok.

You may want to Consider the pregablin as u say you have pain in joint a etc. I get similar symptoms I’m on 200 x 3 times a day it Went up gradually. Felt a little spaced out to begin with but it really helps me I’m a single mum with 5 yr old 15 month. I left their dad when baby was twelve weeks the following week ms started my right side stopped working don’t get me wrong the drugs aren’t a miracle but it’s enabled me.to have my children back home. So for me drugs are a no brained. My daughter lived with my mum the end of the fay I ant my kids xx