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Scared and frustrated :(

Hi everyone, I’m feeling a bit low at the moment after seeing my neuro on Monday. I was dx in Feb '14 after having my first huge relapse in May last year. This followed several years of me trying to ignore numbness and other symptoms that I hoped would go away - stupid eh!! I was given methylprednisolone in July when I first saw my neuro, as he was pretty sure I had MS from my symptoms, and it had affected me terribly…I was in a wheelchair within a fortnight, and my left leg was pretty much paralysed. The methylprednisolone helped to the extent that I can move my left foot now, but I use a frame to move small distances at home, but need the wheelchair if I leave the house at all. Anyway, I had another MRI in March, following my definite diagnosis from the first MRI and a lumbar puncture, so that he could see any changes since last July. I saw him for the results on Monday, and it was sort of good news in that my MRI didn’t show any changes, but that meant that he could only class me as having had one relapse, and so he can’t prescribe DMDs until I have another relapse :frowning: I’ve had Physio, and now just have exercises to do with my legs whilst seated each day, but they’re just designed to maintain my muscles, not to improve my situation. I’ve also been prescribed Amitriptyline to help with nerve pains and mood swings. I started on 10mg, and am now up to 40mg, but it doesn’t seem to help much, and that’s the only medication I’ve been given. I guess I’m just very scared that the first recorded relapse has left me with such catastrophic problems ie complete loss of independence, which my neuro says will now be permanent, that the next could also be very debilitating and leave me in an even worse position. Is there anyone else in a similar position, or does anyone have any advice?

I’m sorry to hear you’re having a rough time. Hopefully someone more informed than me will reply to you soon, but my message will bump you up the forum. I’m also on Amitriptyline but I’m on 150 mg now. I got that through my GP, so maybe you need to ask your GP about it. It does help nerve pain a lot but Neuro’s don’t seem too interested in it. The thought of relapse brings fear to everyone. The last one I had was the worst I’ve ever had.since that I’ve had about 2 weeks of feeling great, so I’m going to keep that in mind when I have my next one .we are all here for you xxxx

hiya Bev,150mg amitriptyline,wow you must be out your head and on another planet lol 10mg does that to me,i’m coming off that and going on something called Duloxetine

Nicky sorry your having such a horrid time,like bev said i cant offer advice but someone on here definately will

I’m not on DMDs, so don’t really follow how it all works. Why does someone have to wait for a second relapse? and all the risks that go with that. I would have thought it would be better to start the DMDs as soon as possible.

All the best to you Nicky, hope someone else can offer advice.

xx

Hi Nicky

Sorry to hear of your bad health last year, I hope that things have improved a little for you.

I am in a simillar position as you, (not definite diagnosis though) I have had a single (under current neuro) bout of paralysis and although I have had a positive lumbar puncture and my MRI has shown lesions in both places, I have not been offered any dmds or treatment. I have read though on a seperate post that some health centres do prescribe treatment after just the one attack. Postcode lottery perhaps?

My neuro just wants me to have a “wait and see” approach towards my definitive diagnoses (I am currently possible MS) and if/ when I have another disabling attack (he is 80% sure that I will) not to bother going to A&E but to go straight to the neuro department and see the MS nurses. He has given me the DMD leaflet to have a read of, just in case. Great!

One thing I have found, which has worked in my favour, is to try and get on with my life. I am luckily, in pretty good health and mentally in a better place than I was in six months ago. I remember that I was very depressed and was probably suffering from anxiety, thinking that I was going to wake up any morning not being able to move. Like what happened before. Its only been since I have tried to put the whole MS thing to the back of my mind, that I have been able to continue with my life.

I do take a 5000ui tablet of vitamin d each day and am trying to go cycling as often as I can, as I find that exercise helps alot. It keeps my mind active and stops me having negative thoughts. I cycle as my walking is not very good at the moment and I can cycle for miles, but only walk a few yards!!!

I know that this sounds terrible, but I have often thought about faking (yes faking) that my previous numbness/ relapse has returned and going to see the neuro. This way, they might treat it as a second incident and offer me treatment. I know its wrong, but to me starting on a DMD and trying to prevent a disabling event happening, must be better than sitting back and doing nothing. I can’t believe I even have this thought, but I have been well and truly left on my own and have no backup or support to turn to.

I am however in two minds and currently copeing (struggling) ok without the drugs and possible side effects.

Good luck

Thanks to everyone for your kind words and help :). Wow Beverly, I’ve got some way to go before I catch you up on the dosage then! My neuro has asked my GP to increase my dose by 10mg each month if I don’t notice it helping, so I’m up to 40 now. Blossom, that’s exactly what I thought…the sooner the better now I’ve got a definite dx, but if wouldn’t be surprised if it’s all down to money. I’m in Lincolnshire…under Lincoln hospital…don’t know if anyone has experience of that hospital?? Number08 it’s great that you manage to stay so positive. I’m getting very good at putting on a brave face, and not thinking too deeply about things, especially the future. At least I have a definite diagnosis, but still feel in a different kind of limbo! I wish I was able to do something, but I can’t walk at all unsupported, and only around 20metres with my frame. It took me 1 1/2 mins to walk about 10metres with me holding onto my neuro’s arm on one side and my husband on the other when he tested me on Monday, and I was exhausted when I finished! Life has certainly changed drastically for me in the last year! Well, I had lovely friends come to visit today, and 2 more coming tomorrow. Had lovely cuddles with a brand new baby too, so there’s lots to be thankful for…it could be worse :slight_smile: xx

Yep, I also think I’m in a postcode lottery, number08. I’m on the ’ let’s MRI and see if you need DMD’s’ point now. To be honest, if I have a relapse as bad as last time, I’m gonna plonk myself in Neuro’s office and say ‘you deal with it!’ Lol. As for faking it, well, it’s not really faking it really. You have the condition, you’re just exaggerating it a bit. If that’s what it takes to get the treatment, it’s a shame isn’t it? You should be offered it anyway. Best of luck xxxx

I have no idea what the prescribing criteria are, but I am bemused by how a person can have such a damaging humdinger of a relapse and not qualify for DMDs. Looking back, you can see episodes in the past that might well have been minor MS relapses that were not investigated. I know the docs do not like to accept that something has happened in the past that has not been documented by other doctors, but doesn’t your MRI scan show evidence of previous attacks? If so - of even if not - I really struggle to understand why they are faffing about and not getting you straight on a DMD to try to head the next relapse off at the pass. In your shoes, I would be getting a second opinion, I think.

Alison

I’m trying to get an appointment with my GP tomorrow to discuss things with him. Like you say Alison, my original MRI showed several lesions, not just one, and I told the neuro about the symptoms I’d been having for ages but had ignored for as long as possible (in hindsight, I now know how stupid this was!). I’ve written a list of all my symptoms as well to see if there’s anything my GP could give me to help with the symptoms…the neuro didn’t seem too interested in addressing my symptoms. I’m in a bit of a vicious circle as I’m trying to apply for ill health retirement with the support of my head (I’m a teacher) and my union, but the occupational health guy feels that they need more evidence of things that have been tried to help me before he can recommend me for it, but my neuro says there’s nothing to try! My world seems to be a minefield of form filling at the moment - have just done the ESA form, but waiting for a letter from my neuro to confirm that I’m not fit to work and won’t be in the future. Well, I’ll see what my GP says, and take it from there I suppose :). I feel like I’m just starting on a very long road, without knowing where I’m going lol!

I’ll be back in a bit to finish this post but google NICE Clinical Commissioning Policy: Disease Modifing Therapies for patients with MS 2014. Sorry this site will not let me copy and paste the link.

Ok I’ve looked at the critera and you would appear to have just missed the boat.

Quoting the above document it states the following in respect of Rebif.

*Neuro’s may in certain other cirumstances where the evidence for efficacy is less secure, also consider advising treatment for:

Patients within 12 months of a clinically significant CIS when MRI predicts high likelihood of recurrent episods (I’m assuming yours did by what you say but you can check the definition in the document above). Sadly you are now outside the 12 month remit.

or

Patients with only a single major relapse in the proceeding two years but combined with MRI evidence of continued disease activity. Sadly as your last MRI shows no change this does not apply to you.

I’m livid for you if you were not informed but not suprised sadly. Therapeutic nihilism is still alive and kicking.

For anyone reading this please look up that document and make sure you know whats what.

I would never have got my hands on Rebif following my first attack if I had not done my own research.

Actually looking at your dates you may be in the 12 months if you had steriods in July. When you say you were diagnosed in the Feb was this following changes on an MRI at the time? I dont understand why you were diagnosed in the Feb following a relaspe in the May unless you had another MRI inbetween which showed changes? What month was your relapse offically documented?

Sorry the above should have said 2013 not 2014. It was published April last year.

Hi humbug, thanks for your help :slight_smile: I’ve had more minor symptoms for years, which I ignored, but finall went to see my GP at the very end of May 2013 when I developed foot drop and my left leg went completely numb. Over the next couple of weeks it quickly got so bad that I couldn’t move my toes or ankle on my left foot, and was using a frame inside and a wheelchair to leave the house. I saw my neuro 22nd June 2013 and he prescribed oral steroids, being pretty sure it was MS, and ordered an MRI. The steroids made me able to move my toes and ankle, although I have very little control of this knee now, and still need the frame in the house and chair to go out. It hasn’t helped with any of my other numerous symptoms…no balance, fatigue, bowel and bladder incontinence, numbness in hands, legs and various other places to name but a few! I had the MRI 31st July, which showed several lesions, and atrophy, including to my brain stem. I then had a lumbar puncture in Nov 2013, and eventually got the results of that in Feb 2014 which confirmed the MS diagnosis, and he said it was probably relapsing remitting. He was still reluctant to prescribe DMDs, and said he wanted ‘more information’ about what was happening, and so I had a 2nd MRI, with contrast this time, on 26th March 2014. When I saw him last week, he said this showed no significant changes, and so as I was classed as only having had 1 relapse, he wasn’t going to prescribe DMDs, and I’ll see him again in 6 months! He timed me ‘walking’ with support on both sides - took me about 1min 27 secs to walk approx 15 metres.He didn’t even put me in touch with an MS nurse (although I forgot to ask him), although I have since got her details, and the support of my GP to contact her. I’m just scared that my 1 recorded relapse has left me in such a bad way, and that I have to just wait for another one to happen! What if the next is as bad as the first! Xx

Nicky , from what you tell me you may have a case. If it was me I would be printing off the document I mentioned pronto and waving it under your neuro, nurse and GP.

As you were diagnosed with MS and not a CIS did your first MRI show old lesions as well as new or was the diagnosis made taking into acount your symptom history? Did you have a contrast scan? This may be the sticking point as you may fall outside both criteria’s.

To be clear if you do fall within the 12 month critera above your neuro does not have to prescribe a DMT but is does allow him to do so under the DOH risk sharing scheme if he agrees.

Can you contact the neuro’s secretery or your nurse and raise this?

Please let me know how you get on.

Thanks so much Humbug, I rang the nurse on Friday and just got an answering machine. I left my name and number, so hopefully she’ll get back to me next week and I can raise it with her. Unfortunately, the first MRI I had wasn’t done with contrast, so I think my diagnosis must be taking into account both the number of lesions and symptom history. It’s just very frustrating that he hasn’t used the same common sense he used to diagnose me, to then prescribe DMDs as well. Thanks so much for all your help, and I’ll let you know how I get on with the nurse. My problem is I’m not a very ‘militant’ person, and just take it for granted that they know best :frowning:

It’s worth you looking at the McDonald revised criteria 2010 which sets out how a diagnosis is reached. The comment you mentioned of ‘no significant changes’ bothers me a little. You either had changes or you didn’t. I’d want to know what these were and exactly how the diagnosis was reached. First line DMD’ are not great and will not reverse your current symptoms but I strongly feel you need a proactive Neuro on your side. My symptoms scared me to death and I recovered. I can only imagine what you’re going through. If I can help in any way please feel free to message me. I am an excellent advocate.

This criteria for DMDs - is it supposed to benefit the patient or the NHS budget I ask myself ?

I would go in and fake a bit of blurred vision if I were you !

xxx