I received my diagnosis of rel/rem last Friday, in a telephone conversation (I did agree, knowing more or less what was coming) and have today received a letter confirming and fleshing out details.
In another letter from the same chap that also arrived today, I received an appointment for the end of June for a Neurology outpatient appointment.
As that is more than 3 months, I just wondered whether that’s an indication of the level of seriousness of my illness, or just bad luck in this area, or whether I may have other appointments coming up that I have not been advised of yet. I know my consultant mentioned on the phone about starting a DMT. Is it usual to wait 3 months for that?
Please understand, I’m not moaning, I’m just curious and wanting to “own” my illness.
The little reading I have done so far indicates that if a DMT was appropriate, then the sooner the better.
I would be most grateful for your assistance, and please excuse any posting liberties as I’m new to this forum.
This was the exact same way i was diagnosed, almost a year to the day. I had a 2 month wait for an appointment to see the specialist- worst 2 months ever waiting not knowing whats going on and having no answers etc etc. You could mabey phone and see if there is anything sooner?
That doesn’t sound very acceptable at all. Once you are diagnosed with relapsing remitting MS, it’s generally accepted that the sooner you start on a DMD the better.
Perhaps you could phone your neurologists secretary and ask him/her what the plan is? Otherwise, have you been given the contact details of an MS nurse, you could perhaps ask for their help in getting a bit more urgency about this follow up appointment. If you’ve not got an MS nurse yet, maybe you could ask the neuros secretary for the contact details.
To me it sounds just plain wrong to give a person an MS diagnosis then abandon them for 3 months to flounder around, trying to get some forward planning sorted in order that you can feel a bit more in control.
Ultimately, if you don’t get some assistance in dealing with your new diagnosis, I’d suggest contacting your hospitals Patient Advice and Liaison Service (aka PALS).
I think a nice phone call or two might be made next week then, just to make sure I’m correct in how this looks.
I wanted a bit of time to look into the various treatments that might get offered so that I had a better idea of what I would and wouldn’t like to receive, and also my wife wants to be involved as well, so we could at least use the time constructively.
I also get the impression that I may not be a particularly urgent case, as I really only found out I had MS by accident really. I had a bit of a limp where I drag my leg a bit, and have had a hemi-facial spasm a few years back. I have never had so far, a relapse that I knew about. So maybe there are more deserving cases getting the treatment first?
(Perhaps by good fortune, in the 6 year period between MRIs, I have had a bunch of lesions that have enable a ready diagnosis, as I understand it.)
Hopefully I will hear from the MS nurse soon, and I could get some information and reassurance from them. My sister maintains a Benenden health care policy that I’m on, perhaps there’s some sort of advice I could get from them?
Best of wishes to you all, and have a nice weekend.
After seeing a ms specialist post diagnosis i then had to wait another 4 months to start a DMT. So all in all i was March to September from diagnsosis to treatment- nothing seems to be done in a hurry;
It’ll give you an idea of what Disease Modifying Drugs could be available and appropriate for you, assuming you want to take them. (My view is that anyone diagnosed with relapsing remitting MS should start a DMD as soon as possible, but that’s not the decision taken by everyone.)
That page that Ssssue pointed out kept me occupied for a while! It would be an awful lot easier if you knew which side effects you were going to actually get!
What catwoman says seems to be what is happening for me, in that the letter says I have an appointment with the consultant, about 3 months from now. He said in the phone call about having a DMD. So presumably that’s when we talk about that.
My sister is somewhat experienced in drug regimens, and says that there’s a tendency to be started on the cheapest, rather than necessarily the most effective, or the least affected by side effects. Don’t know that is true, but an interesting point.
One thing that would help balance the side effects list with each drug, would be to include the possible affects of doing nothing. My wife took one look at the list of side effects of the drugs and her initial and understandable reaction was don’t do any of them! When I pointed out the possible effects of a relapse, and thought about it for myself, you begin to see what the game is.
Sunshine, your input is helpful. As you say, nothing may be done that quickly, but it is free! And on the plus side, if you choose to use the time to learn about a lot of this stuff, perhaps it’s no bad thing?
Yep- basicly I used that time after diagnosis (after a lot of tears/anger!) to research the disease, treatments, options etc. I read A LOT of research papers and spoke to some family members who although are not neurologists, are consultants in other fields of medicine who could point me to good sources of information. I decided pretty early on that due to my age and wanting children in the near future lemtrada was the drug for me- I met the diagnostic criteria for the drug, and I knew my Heath board offered it. That then meant that I went to my first meeting prepared, and could put my case forward for lemtrada from the start. I was lucky though, having that support network around me, when I first saw the nurse she was very surprised when I started telling her about my research and i don’t think she would of mentioned lemtrada if I hadn’t…but for me getting what is very active MS under control was my priority pre children. And I have been incredibly lucky that I haven’t had any side affects thus far
You’re right that the potential side effects sound pretty scary. And in fact I should be the poster child for avoiding DMDs as I’ve had side effects with nearly everything (and I’ve had 4 DMDs).
But my problems with side effects have lead to my having been on a DMD for only about 5 years out of the 20 since MS started for me. And this has lead to very damaging relapses. So I’m now very disabled. Over the last couple of years I’ve tipped over into secondary progressive MS, but if I’d been able to tolerate one of the excellent DMDs now available, I might now be able to walk. And a whole host of other permanent disabilities might have been avoided.
This is the whole trouble with MS. It’s unpredictable. You don’t know what would happen if you did nothing, and you don’t know what side effects you’ll suffer if you opt for a DMD.
In your situation, it’s a decision you should make with your wife, but also maybe with the help of an MS nurse or your neurologist. Bear in mind though that there aren’t many of either who’d recommend that you don’t take a DMD.
I’m sorry to hear of your diagnosis. In my experience long waits are pretty typical although once your in the DMT system the support gets better. Being on Lemtrada I’m actually fed up of having to see my nurse so often and have asked to reduce my number of appointments. Back in the early days I felt staved of information / support and felt pretty desperate.
Regarding DMT’s much info these days promotes starting early. These are the guidelines for prescribing: http://pn.bmj.com/content/15/4/273
I chose treatment as soon as I could and 4 years on don’t regret the decision. For most people the side effects are well tolerated and you are regularly monitored. I totally agree that there should be an accompanying side effect list of MS - in my view I think if these were spelled out so clearly more people would be asking for dmts.
Take heart there are some very good treatments for RRMS these days and many people live with MS very well.
Hi Nev Welcome to the club! The sooner the better when it comes to DMDS when I was making mt decision things like working and fitting the DMD into my life were taken into account and so I am on plegridy. Very happy to be. For me I work full time still have a daughter and would never remember to take a tablet every day so an injection (no tablet to forget) fortnightly (daughter at nannies) with one work from home day following worked lovely. Think about all these things and your decision is easier as the options are less cos you can just cross some out - get on to em! ! The cheek … three months !! Take it easy
I have learnt to judge posts by content, not spelling or paragraphs, but your apology did make me smile, because you cared!
It doesn’t seem to be such a long time as all that, the 3 month wait, and perhaps when I get an MS nurse assigned I will find out more.
I don’t feel up to moaning about it, and I just cross my fingers it won’t matter. Besides, in the great scheme of things, my little health hiccup isn’t a big deal for the world. I will use the time for research, and to know where I would like to steer my treatment.
My nurse kept saying I would be on meds ‘soon’ but it is 5 months since my dx and I finally get delivery of my first meds on Tues next week. The past two weeks I’ve felt that my immune system was ramping up, and today I have p&n in my left arm really strongly. I wish I had pushed harder, but I’m not sure what else I could have done other than launch an official complaint. And didn’t want to do that because I know I will need all these people on my side in the future.
My personal belief is that it is down to the lack of funding. For so long MS was a diagnose and adios disease, so there was no hurry for anything and not much that could be done. Now we are all clamouring for DMTs and MRI checks to monitor activity, needing blood tests regularly to monitor levels and wanting to see our neuros more to check that we are on the most effective/suitable treatment for our particular MS.
There aren’t enough MS clinics, there aren’t enough neuros, there aren’t enough MS Nurses, there’s not enough in the budget for MS meds or research. People get very exercised about the waiting times for cancer treatment, and I understand that completely, but the waiting times for neuro appointments are so very much longer. It is now a time critical disease, but the system hasn’t caught up.
I’d campaign to try to change it, if I had the energy!
I suppose the trouble is, as always, if you increase the funding, what else goes without? Then all the people who don’t think they should pay tax start squealing, and then the media distort it all, and it becomes a cheap political point scoring exercise.
I would like there being enough in the pot, so that nobody waits, nobody goes unsupported, and research goes on with the good scientists being adequately or even well paid. Instead, it seems shareholders in big pharmaceutical companies are the main beneficiaries!
We can dream of a more effective NHS I suppose, but it’s not happening overnight, or with this government.
