MS in all its glory

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”.

they do in theory, but none of them around Dublin are taking on new patients. Full workloads. It’s worse that trying to get a GP. 2015 is a very long time ago in medicine.

On an up note, I’ve been granted the Ming Term Illness card, with an OT told me was a prerequisite for qualifying for any kind of assistance from the HSE at my age. Not that assistance would be forthcoming, but it’s another piece of jigsaw in place.

I had a fall last week which has seemed to ease , but all of a sudden I seem to have hurt ribs . I can’t figure it out

Had an interesting meeting with consultant, who couldn’t have been more empathetic. Hasn’t altogether ruled out treatment but explained very well why for the present he is holding it off. As things stand presently I would succumb to cancer or sepsis for a very toxic drug that has marginal efficacy in Progressive MS. Be put it way more nicely that that. However there’s the respiratory consult to see, also back to the surgeon.

I had that a month ago. Baclofen helped with leg cramps but not with the foot ones . It seems to be heat/ humidity related

Back in my chair . 15 minutes trying to get on my feet after a fall

Thing is whatever about tripping when I walk , I find myself having to grab doors /walls or anything just standing still .

Has anyone here got the shingles vaccine . I rang my GP practice yesterday and they were supposed to ring me back to see if I qualified by being immuno suppressed .