MS in all its glory

Its quite odd that you haven't seen a consultant yet since you were diagnosed. You should have been offered a DMD as soon as you were diagnosed too. I'd be chasing that up, shout louder and you will be heard. Plenty of much better dmds out there now ,avonex is old. You have a choice of tablets or infusion that are much stronger than avonex. They all good it's about finding one that suits your lifestyle.

I was but since being diagnosed I’ve moved from south to north and to a different trust . I was signed off Avonex for liver issues. The last few months have seen a decline in my ability that’s , imo , quite drastic . I know a DMD won’t change that but I feel like I’m being lost in the system.

I have an appointment next month with a respiratory consultant to try to see what is my best strategy to deal with recurrent aspiration pneumonia, I seem to spend at least a quarter of my time on amoxicillin, always sets in during a time of multiple episodes of choking on my own saliva. A speech therapist told me in my case it’s due to lack of sensory feedback from my mouth urging timely swallowing. At same time my speech is just beginning to be affected at times.

If you progress to the late stage of MS, and if no other unrelated disease intervenes, and all else being equal, this is what claims you, indeed it’s what ends the lives of many with serious neuro issues. There’s no way of really eliminating it, but perhaps lessening its occurrence. The speech therapist said to try and remember to swallow every time I see something or other, but this doesn’t work during sleep and it is very hard to keep up consciously thinking to do something that is an automatic function in the majority.

Has anyone here being dealing with this issue, and how do you cope with it?

I would be more inclined to go to a minor injuries clinic for the Xray rather than spend 25 hours on a chair in A&E, but I’m Dublin based. Well and good if it’s not broken and even if it is, might be managed by the clinic as when happened when I broke my foot. Any way of avoiding the horrible ED. But if you are located well away from one of these facilities you don’t have that choice.

MS nurse, lol. My one and only attempt to contact her was met with “return to your GP”. SVUH is a joke of a hospital, they managed to fail to see one single one of my MRIs and told me diagnostic process has to start at square one again, even though I have symptoms of advanced secondary progressive MS. I have a complaint in with the Ombudsman. Several other people I know first hand, have had this fate in SVUH, and the clinic doctor even had the gumption to say “records can go astray when you get MRIs taken at a different hospital, it’s not at all unusual for a patient to find themselves in your position”.

Also she had the gumption to say “at least you don’t have Motor Neuron Disease or Parkinson’s “.

Completely tone deaf staff at that clinic.

No minor injury clinic near me and I'm in NI . I 'm pretty sure nothing is broken as it's getting better, as in sharp pain when I stand up is gone. Though there is still pain standing on my right foot and the back of my leg (hamstring ?) so I'd like to make sure as walking on a stick is hard when you can't put weight on your 'good' leg.

It’s a real pity there’s no injury clinic as you are in and out in less than 2 hours, with treatment plan, and really only if surgery is needed are you then referred to a hospital with all preliminary images & assessment t done. You do want to make sure you do the right thing by your “good leg”.