I finally have my appointment with specialist for the 15th Jan for my DMDs, which by the time i go will be 8 weeks since dx, so can someone answer me this?
MS is a condition that progresses with time, so therefore likely to produce more severe/delibatating relapses, so why are people who are newly dx, not put at the front of the queue for seeing the specialist?
Im not trying to detract from others, but surely the sooner you are treated, the better the chances for the future?
Please understand im thinking out aloud, and do not mean to offend those long term sufferers with my ignorance
I think the answer is in your question…‘MS is a condition that progresses with time, so therefore more likely to produce more severe/debilitating relapses’
No matter what stage of MS you are at we all need to see the neuro when we are having problems as everyone has a right to a quality of life.
MS affects everyone differently so being at the front of the queue for the specialist will not make much difference as you would not be waiting years for treatment.
I, unfortunately was told today that i have MS after being wrongly dx with fibro 18yrs ago…
I have learned to have endless patience over the years and fortunately have only seriously deteriorated over the last 3 months…[i’m now 46]…
There is no hard and fast rule, but statistically, relapse activity tends to peak early in the course of the disease, and taper off - not the other way round. The disease continues to be progressive, but over time (years) tends to be characterised less by relapses, and more by continual deterioration, in the absence of relapses. Someone who no longer has relapses at all is said to have moved from relapsing remitting MS to secondary progressive.
Anyway, this is probably a bit off the subject. Basically, in the context of a lifelong illness, eight weeks isn’t really a long time (though it may well seem so while you’re living through it). For the vast majority of people, MS isn’t a life-threatening emergency, so the timescales reflect that. It’s serious, and yet not urgent. Eight weeks won’t be the difference between life and death, and will probably not make a measurable difference at all to how well you’re doing in 10 or 20 years.
Some amount of anxiety about DMD’s and what the future holds is to be expected if you have been recently diagnosed. However, I would hazard a guess that you have had symptoms for much longer. Is your condition different because they gave it an official name? No.
Everyone is different regarding how MS affects them and to think that the more time that passes is therefore likely to produce more severe/delibatating relapses is not particularly accurate.
In my opinion there is only one thing which can be said unequivocally about how all MSers are affected and that is that everyone experiences the unpredictability of symptoms. By its very nature and because of this one cannot generalize about progression.
Personal responsibility for controlling what one can regarding their condition enters into how MS affects each individual as much as an appointment for DMD’s. If one chooses not to take exercise, watch their diet, control their stress than this will be detrimental.
To put things in perspective there are people who have waited years and years for official diagnosis, myself included. You just have to learn to control what you can to be as well as possible whether officially diagnosed, or as we have discovered over the past weeks if you are diagnosed with an MS mimic, or if you are “healthy” without having to deal with a debilitating health condition
Time passes very slowly when you are waiting for an appointment/test results/whatever. In the emotional chaos of coming to terms with an MS diagnosis, it is easy to become fixated on one small thing that is (potentially) within human control - an 8 week wait for an appointment, for instance. Please try to chill and don’t get too wound up about this. As a newly dx person, you have a lot of tricky stuff in your emotional in-tray at the moment. Try not to get too het up about the wait; in the great scheme of things it almost certainly doesn’t matter very much.
As the others have said I am afraid waiting is something you will have to become very good at.
When you do see the neuro that doesn’t mean DMD will start straight away, I’m not sure if when you say specialist you mean the ms nurse as they tend to be the ones that go through choices with you.
When you do decide on your preferred option it then has to go to funding panel which again takes time. It was agreed I met the criteria early Feb but didn’t start til mid May.
What you could do is go on msdecisions and look at all the options available to you and do the tool at the back to help you decide which you think is the one for you. If like me there is only one that you feel is right for you it enables them to process it slightly quicker. Whatever the outcome it will give you greater insight into this new world you have joined.
It is a sad fact that almost everything takes too long in MS neurology in the UK. There are too few neurologists, too few MS nurses, too little funding, too much paperwork, etc.
However, MS is not an emergency. It’s a chronic, life-long disease and, while starting DMDs early can make a big difference, the data show that it’s the first two years that’s the starting period to aim for. With that timescale in mind, 8 weeks just isn’t all that important.
Something that you can do to speed things up is already know what DMD you want when you have your appointment. Alternatively, you could try emailing the neuro & nurse in advance - telling them that you know what you want and would rather get the process going than wait for your appointment if that’s possible. It’s then a paperwork exercise: getting the funding, getting the logistics set up, getting the prescription signed, etc. That process can take 8 weeks or so (or maybe even longer), so the sooner you kick it off with your decision, the better.
