@Nick-G

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Nick-G

Recently Diagnoised

Hi I was wondering if you might be able to help me? About a month ago I was told by a neurosurgeon that I have MS Relapsing Remitting, at least that is what I think he said it was a bit of a whirl and a shock as I went for an MRI as my Chiropractor thought that I had a slipped disc. Anyway and I am sorry for the short notice but I am going back to see him tomorrow and I have been told by a few people to go with a list of question. But I really am not sure where to start or what to ask?? As far as I can tell from everything I have read on the internet every case is different and I just need to take and live everyday as it comes. However any suggestions of questions that I should be asking would be appreciated. Oh after the clarification of the type of MS the main one I have is that he has diagnosed the MS from a MRI of my head and cervical Spine do I need to have a lumber puncture? Any help would be appreciated, thank you.

katfight

@katfight

@nick-g I did not have a lumper puncture so I guess it's something u can ask.. I didn't have a list of questions either but I found myself asking things like: Shud I change my diet Can I attend the gym Do I need to tell the dvla Can i go abroad when do i get medication and what kind I ask a million questions now on here as I ask things I'm faced with at the time.. i didn't really understand what it was therefore had no real questions other than when will it go away.. Hopefully the guys on here will help you out more but for me it's the after care i receive now from here that helps me to figure things out :) Take it easy x

Tabbycat

@Tabbycat

Hi nick - it is a shocker hey! I was told all my problems were from a slipped disk for 6 years and could not believe my ms diagnosis until I had the lumbar puncture, which confirmed the MRI. If you feel that the diagnosis is correct because you had a feeling all along , then don't bother with a lumbar puncture because it can be painful , during and afterward, but if you need real confirmation before you can accept it, then get it done. If it all still points to ms, then you need to start a medication to slow things down. Your neuro will make suggestions and you need to do some research yourself. I suggest you do not allow a doctor to tell you not to bother with meds, they are expensive, but I think , and so do most people, that they work. Take a really deep breath, it's going to be ok, just not what you planned. Big hugs.

vasy

@vasy

Hi @Nick-G Sorry to hear you got this diagnosis If I were in your shoes, the first thing I would ask if your neuro certain about the MS? Could be any other causes for you symptoms and MRI? What type of the MS do you have? What prognostic group do you fall into? What DMT are you eligible? Lumbar puncture could have diagnostic and prognostic value. Regards.

judy-gy

@judy-gy

Hi, here is some of my history that I hope answers some things at least the lumber puncture question: So, I was called back to “Inflammation clinic”, was pleased to see the consultant again. So consultant lady said did I know the diagnostic threshold for M.S. was 10 legions. Now I know the meaning of the word legions, especially brain ones, holes that should not be where they are. Wiki says; the destruction or degeneration of brain cells. (I do wonder if she thought I’d know the meaning, or if it is a word said to all and some won’t know). So I’m crying, we look at my scan. As we move through the brain, looking at where my brain should be there are two things - Holes: I stopped counting at 12 holes (she did say “look your emotive centres are clear, that’s good”. Then bright white where my cerebral spinal fluid circulates and supports my brain. She said the bright white (like ski slopes) was inflammation. How is it possible to tell someone they have M.S. and be there to answer their questions? When you are told, you want the best person to tell you, but you also aren't ready with the questions then either. Shock, tears, trying to look at the scan and listen at all was all I managed. She did tell me not to read anything over 10 /20 years old on the web, as treatments so much changed, but didn't tell me what I was to read...... it took another visit to realise waiting room full of M.S. stuff. She did look at me and say “Now Judy…………. I want you to ……… stop smoking. (she may have said can you do that?). I said I can do that. Never did smoke much, but had smoked quite a bit for me leading up to this. I said later, that I’d have one more,, I did have some, it was awful. That was it, I don’t smoke. When others smoke, I do think: “lovely fags”, but not so much as to actually smoke any. So she said that I could try Gabapentin (usually for pain, I don’t have any) that I was to have a lumber puncture to rule out the last thing that can mimic M.S. That I would be having I.V. steroids to reduce inflammation. lumber puncture was fine and ruled out the thing that mimics M.S. Jx

janep

@janep

Hi @Nick-G, really sorry to hear your news, I hope you're doing ok, but welcome to the site, you'll find lots of support here over the coming weeks and months as you adjust to this. One thing I'd recommend asking tomorrow if you don't already know the answer is whether you have access to an MS nurse through your hospital as they can be an invaluable source of information and support. Is someone going to the appointment with you? An extra pair of ears can be helpful as, as you mentioned yourself, you can't remember everything and having someone else to help piece it all together afterwards can really help as I completely freaked myself out for no reason as I only took in half of a point and missed the good half! Hope it goes well tomorrow and remember we're aways here to answer any questions that crop up after you leave the consultants room, take care Jane xx

Jonesbear

@Jonesbear

Hi @ Nick-G Sorry to hear your news I think making a list of questions would be a really good idea I know when I was diagnosed my mind went completely blank even though i new it was coming and still I'm a bit in shock and finding it difficult to come to terms with it so I recommend going there as prepared as you can and hopefully you'll get some answers. Good luck. Jonesbear.

US-Emma

@US-Emma

I agree- bring someone, or 2 someone's- they are less likely to be as emotionally rocked by this & ask questions you would have asked- encourage them to speak up before going in so they know it's ok & helpful. Second, get on treatment immediately. Lemtrada is now first line for newly diagnosed in the UK of the two strongest therapies out there (Tysabri is the other) I personally think Lem is safer & most effective. The name of the game is preserving brain cells & function. (A great comparison of the two can be found here: http://multiple-sclerosis-research.blogspot.com/2014/08/clinicspeak-natalizumab-or-alemtuzumab.html. This is also a great resource in general for the latest in M.s research, treatment & clinical information, I read it every day) I wish you the best in the upcoming days. You will get a lot of new information and have a lot if questions- post them here. People are awesome about giving tips & being supportive! Take care, Emma

Nick-G

@Nick-G

Thank you all so much for your kind words and questions for me ask. I have put together a list and will defiantly ask about medication. I will keep you all posted. Thank you again.

vasy

@vasy

I agree with Emma. There are _very_ effective therapies available for the early MS this days. Some of them could possibly be a cure, at least for the proportion of the patients (we don't know this for certain as it requires a lot of time to pass before an MSer could be considered cured from his disease, but the preliminary results are astonishing). And more others are under their way to the license. And when you will be offered with the treatment, it's better to start ASAP — the earlier you start the better will be the outcome, this is universally accepted this days.

msmyinitials

@msmyinitials

Sorry ti hear that you have gotten your diagnosis, but at least you know what is going on. I am a 30 year person who has lived with MS have a child who is 27,and have been happily married. So know that there is life after diagnosis. This is a time when things are moving forward in the MS community, new drugs, new therapies, new alternatives. I do recommend that you start medication as soon as possible as they know that people do better throughout the course of their life, if started as soon as dx'ed. As far as the spinal, look if they found plaque on your brain, in enough places, you have MS and really he spinal tap is a older type of dx for MS which looks for a specific protein called oligoclonal bands and if it is in your spinal fluid, well if you have to, then do it, but I would be sure your doc is able to back up why, and ask him or her if they have ever had one (I did, he had and apologized but my dx was a LONG time ago) Go in with all of your questions written down and ask them all. If they don't have time too bad, this is your life, make them have time and in the future find a neuro you feel a good repore with. Bring a friend or loved one or can listen to the answers. I still get stupid at times when it come to the answers so I always bring my husband. This is not the end of your life....It is the beginning of a new chapter. One that you will have a whole lot of support through this group of people (I only just met them and wish I had them years ago) You'll learn to laugh , and if you don't find me and I'll find that for you @msmyinitials I'll be thinking for you

msmyinitials

@msmyinitials

Nick, just so you know, if they have justification of plaque of your spine as well as your brain, don't put yourself through a spinal tap. It is just not worth it. Others have said to be sure you have the disease, it must be different in the UK the in the US because plaque on the brain and the spine are indicators of MS and will have you put of some type of medication regimen immediately to slow down and hopefully stop the progression of the disease. Sorry I'm so long winded, but I wanted you to know my side just in case.

Gwenny

@Gwenny

So sorry to hear of your diagnosis, but as others have said you will find heaps of new friends on this site, and there's not such thing as a silly question. Ask away, and someone will answer your queries. It's all very new for you and can be very confusing, so good advice from everyone here.... take someone with you to your Appointments, I always take hubby with me, and seriously, I think he understands the whole "MS" thing, more than I do and I'm the one with it. Hope your appointment goes well, and please let us know how you get on. I was diagnosed just 12mths ago, and my Neuro did a Spinal tap, but I didn't feel anything, because at the time 3/4 of my body was numb, but because of quick treatment, I now have most of my movement back :-) Keep your chin up, you have lots of support here :-)

Lina

@Lina

I agree with everyone I got results of my mri scan at beginning of May got referred to neuro on NHS 3 mth waiting list got in touch with a private consultant got admitted to hospital had a lumber puncture mri shown lesions on brain and on my spine had trouble with my left arm so was pumped with steriods was told to keep my nhs appt saw a locum neuro assessed me looked at my mri scans said I had a ms wasn't given any meds to have another mri scan in October got MS nurse absoutley brilliant with me yes as everyone said ask as many questions you have at the moment only on Gabapentin for burning of the nerves. Good Luck Lina

Graham100

@Graham100

Hi nick. Well you got lots of advice, the lumber P. isn't really painful like someone suggested, more uncomfortable, iv had a few, and it's not essential to take any drugs they suggest you take, wish I had taken first nuroes suggestion and not take any, of course I thought he was mad, must need drugs? So I got them from new nuro changed hospital since then iv just got worse,, stopped taking all of it now, no worse?? Would I have been no worse 2yrs ago. Which would make me much better than now???

Baobab

@Baobab

Hey Nick! this is a great site for all those questions you'll forget to ask at the Neuro's. I too was recently diagnosed, though saying that it's actually been 2 months now since actual diagnosis, and still haven't got my head around it. I noticed US-Emma (I would tag but not sure how! sorry) say that Lemtrada and one other medication are offered in the Uk for early cases. I am in the UK and have not been offered these, I am due to start Rebif. Am I missing out on a better medication or is Lemtrada for specific cases?

Nick-G

@Nick-G

Hi just a quick follow up after seeing my Neuro this morning. He does not feel that I need to have a lumber puncture as he believes from the MRI that I have a mild or benign form of MS, he did say that although due to the recent relapse that has prompted the diagnoses he feels that I should just continue living normally and not worry about it too much. If the symptoms progress over the next few months or years then we should maybe look at DMDs. Basically onwards and upwards and chin up it will all be ok. Feel a little daft now but slightly relived at the same time as I wasn't looking forward taking DMDs and any potential side effects. Just need to alter my diet and lose some weight and hope that a healthier lifestyle will not make it worse. Thank you all again for your help and support.

Lina

@Lina

Hi Nick-G brill news take care of yourself Lina

US-Emma

@US-Emma

@Nick-G, Yes the UK has approved Lemtrada (Alemtuzumab) as first line therapy within your system- please some in the UK chime in with the name. The clinical reports of the drug outcomes show that it is most effective in newly diagnosed can the term "cure" has been used. Although I don't think of it as a cure, more like slowing progression to a near standstill. I will post the latest UK long term follow up research (13 years, 87 patients) to my blog today(Lemtrada.blogspot.com). More than half had no advancement of their disease over the course of study- some even improved their disease from where they were prior to taking Lemtrada. Many neuros in the UK are unaware of the updated guidelines/approval or take a "wait & see" approach with MS treatment. Over here time between diagnosis & start of a highly effective drug is days, not months or years, even if you don't have insurance the drug company will give it to you for free. For more details on treatment in the UK I highly recommend following the blog out of Bart's & The London mentioned above. I know one American who when there to get Lem in May because it is not approved here. She saw Neurologist Dr. Ben Turner. I got mine in Germany. I am unsure where Tysabri falls on your treatment option menu through the state health. I don't think it is first line. Personally I think Both are stronger than anything else out there. Further, I think Lemtrada is the strongest of all & safest of these two. Be Well, Emma To cite someone put the @ symbol followed by their handle, under the picture, spelled exactly the same caps & all

Jonesbear

@Jonesbear

That's good news @ Nick-G let's hope it stays in remittance for a long time and I don't think a healthier lifestyle can do any of us any harm good luck for the future.

msmyinitials

@msmyinitials

Nick congrats on a dx like you got. I would recommend that you get a second opinion as the most important thing with MS nenign or not is to get on medications as soon as possible as it is said that it can be the moderating factor in living with MS. I recommend you look at the movie made here I thinnk called "By 6" It speaks to 6 researchers and gives some really important information. So glad for you, don't want to be a Debby Downer , but want you to be the best you can be. keep well...ms

Stumbler

@Stumbler

@Nick-G , I'm not sure but this may be what @msmyinitals was referring to :- https://shift.ms/resources/ms-reports/

US-Emma

@US-Emma

Nick, When I first read your news I had the same reaction as @msmyinitals - Get a Second Opinion. Starting meds (like @vasy mentioned) is so vital to preserving brain tissue and future function. For the first several years you may not 'feel' any different but we know damage is being done- even before your first MS symptoms appeared (my first symptoms were at 19, diagnosed at 29). There is so much research on this data, here is one: http://multiple-sclerosis-research.blogspot.com/2014/08/spinal-cord-damage-occurs-early-in-ms.html at the bottom of that post it reads "This study demonstrates that there is evidence of spinal nerve damage even when you get your first symptoms. This further supports what ProfG has published previously" So damage starts before you even have been diagnosed. This particular post was dealing with the spinal cord but the same holds for brain damage. This is a very good chart of the idea of 'smouldering MS'- meaning much more is going on with MS than is detectable by your senses or even an MRI: http://multiple-sclerosis-research.blogspot.com/2014/07/clinic-speak-smouldering-ms.html MS is never 'inactive'- if you have it- it is progressing- whether you feel it or not. Here the doctor is actually saying that even people on meds are progressing- yet another reason to fight for something strong against your MS like Tysabri or Lemtrada. This post is about children with MS but the same type of prescribing happens in the UK and elsewhere- prescribing less effective drugs at first at a great cost to the patient's future functioning (ability to walk, pain, cognition, fatigue, ability to work etc): http://multiple-sclerosis-research.blogspot.com/2014/07/cognitive-decline-in-young-msers.html I could go on and keep citing but I guess the point is made that I am passionate about early & aggressive treatment... @baobab yes, you should consider Lemtrada first line- Rebif is just not as active against the disease. Lemtrada is now approved in the UK through the 'free' system as a first line therapy. I really hope the best for everyone and a strong, vibrant future, I am officially stepping off my soapbox now... Take care, Emma

msmyinitials

@msmyinitials

@emma thanks for helping me to know my position that being on meds as soon as possible is agreed upon across the pond! marcie

msmyinitials

@msmyinitials

@stumbler you really are remarkable and yes that is exactly what I was referring to. I am amazed at how well versed you are, and quite humbled.

katfight

@katfight

Sorry to crash the post... but opinions please, copaxone or lemtrada?? X

msmyinitials

@msmyinitials

I am on 40 mg Copaxone every other day but it has only been a month. I have chosen to take it without the autoinjector as self injection for me is much easier. Side effects have been bad, bumps on my legs when I was using the auto, haven't had them with self. I do get a little itchy for a few minutes after, less so if I take the time to ice. Never taken Lemtrada sorry.

US-Emma

@US-Emma

@catfight for efficacy there really is no comparison- Lemtrada Other than efficacy what are your concerns/goals with a therapy? If you want a play by play for what it is like to go through Lemtrada therapy my blog Lemtrada.blogspot.com goes through the experience of 5 women who have taken it this year. You have to go back to March and read through for all the info but you can also skip around & read just what interests you. Emma

US-Emma

@US-Emma

Marcie, Why are you dosing every other day? I though Copaxone was daily. Have they changed the formula and dosing? Cheers, Emma

Graham100

@Graham100

Us-Emma. Hi sorry to bother you have you personally been in the position of not being able to walk more than a couple of steps without holding onto or using crutches etc? And the lemtrada has helped your mobility?? Or have you been taking before you had bad problems, and you feel that it's prevented it from getting that bad? It's just that nothing iv had + rebif has made any difference to my rapid deteriation over 2yrs, or is it just that iv always been lucky!!!(Not) lol. Thanks.

sunnydaylover

@sunnydaylover

Hi, I am recently diagnosed too, and did not have to have a lumbar puncture done as MRI was conclusive. Yes they like it done, and if it was done on the upper spine I would have no problem doing it, i am not afraid of things, well, you know what I mean, don't like them, but if has to be done, fair enough, but no way were they fiddling about in the lumbar region on my spine, but, hey, thank the lord for a conclusive MRI. The diagnosis was a bit of a shock. I hope you are ok. Lots of knowledge on here. Stumbler is amazing and lots of other friendly helpful folks too. :0)

US-Emma

@US-Emma

@Graham100 There is a good article to read on the longterm data on Lemtrada. It is the most recent post on my blog- lemtrada.blogspot.com Basically the less accumulated disability you have is the best predictor of how you will do (along with time since diagnosis, these compete for top 1), then how many relapses you have had in the past 2 years, then age. So if you are relatively recently diagnosed (less than 10 years), have a lower accumulated disability and have not had relapses in the past few years you should do well. @stumblr can you chime in here regarding the NHS guidelines on who qualifies for Lemtrada? I cannot speak to that at all. My personal story: At the time of treatment I was recently off Tysabri for 6-7 years. My JCV Ab titer was too high to safely continue Tysabri. My neuro was out for personal reasons leaving me in limbo. I am a retired Nurse Practitioner here in the US (similar to a clinical doctor there, not surgical) and did some research and decided Lemtrada was at least 'as strong as' Tysabri. As it was not approved here I traveled to Germany in April 2014 for Lemtrada. Me prior to Lem: Diagnosed 2003, so 10 years. Had retired as a Nurse Practitioner due to mental fog and concern I might make a mistake in writing Rx for pts (missing interactions, drug side effects, etc) I went into medical research but due to fatigue I transitioned to a work from home position in 2007. Prior to Lem I was only able to clock in to work a few hours a day from home. Other symptoms: Mental Fog, Pain Syndromes, Immense Fatigue which limited walking, shopping, etc (my husband did all that), I could no longer do things like dishes or laundry due to fatigue. I am a very optimistic person but was starting to get down about it all, kinda giving up fighting MS on a daily basis. I also had some eye issues, the most significant of which was my pupils would not constrict, causing pain day and night (headlights at night). I was no longer driving due to this and fatigue. I am about 22 weeks post my first Lemtrada infusion now. All of these symptoms have improved or resolved. The blog: Lemtrada.blogspot.com really details these changes well, too many to describe here. I am able to clean house, shop, drive and travel again. I have significantly less pain and fatigue. The mental fog is improving and the eye issues resolved! I really did not expect these results- I was just looking for Tysabri replacement and found improvement in a safer drug. A disclaimer here- I am a proponent of aggressive therapy and seek it out. If this is not your personality please make the decision that is right for you. Another woman whose story is documented on the blog "Beth" is 60 and was treated at Barts and The London Hospital by Dr. Ben Turner in May. She had more mobility issues than I did- I am also 40, so our age is significantly different. I have not posted her updates recently but we email almost daily. She is feeling stronger overall and her walking is improved. Here is an email portion from her yesterday "I do push myself physically--exercise or do PT almost every day. I started off quite a bit worse than you in basic walking and flexibility, but I am better" also "my leg cramps, especially at night, are almost gone and my energy is better." I was also treated 6-8 weeks before her so my improvements manifest sooner. The conventional wisdom is to assess how you are doing at 6 months post first infusion. Neither of us are there yet but both are seeing life changing improvements. This is significant- people with MS just dont get better- it is a progressive disease, it just gets worse. To see any improvement with this diagnosis is nothing short of a miracle in my book. I hope this helps. Emma

US-Emma

@US-Emma

@stumbler can you chime in here regarding the NHS guidelines on who qualifies for Lemtrada? I cannot speak to that at all. Emma

Stumbler

@Stumbler

My pleasure @US-Emma . This website suggests that it will be available on the NHS in the UK from this September:- http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada

Graham100

@Graham100

Stumbler. Ok that might be what my nuro was talking about getting me on when I last saw her she said somthing coming soon!! Seeing her oct. so we shall see. Thanks

Jonesbear

@Jonesbear

I wasn't told I had the option of having the Lp or not the neuro told me I had ms because of lesions on my brain and then told me I'd be receiving an appointment for a Lp in a few weeks. And to be honest I found the MRI scan worse than the Lp because I found it very uncomfortable and I've never really been able to keep still for very long so it ended up being done 3 times because I moved.

msmyinitials

@msmyinitials

i don't know in the uk but in the US I have been put under sedation for my MRI due to severe arm tics and inability to keep still due to dancing legs, the more I try to keep straight the more they move. LOL As far as the LP, it is no longer the gold standard of diagnosis of MS at the larger facilities here. That would be the MRI, if you have 2 episodes that last longer than 24 hours and occurring at least 1 month apart. If you have at least 2 legions on your brain, and legions on your spine these are indicators. lp's do rule out other diseases that may not have brain involvement etc. Evoked Potentials can also be used.