MS in all its glory

Got all my scans, popped into E: drive and compared recent Left-MRI with contrast and right- previous MRI without contrast, of same slice.

It’s an interesting exercise. Essentially lesions are the same in location, just much better viewed with the contrast.

Previously, Blackrock had asserted they would not be doing any contrast as gadolinium is a metal that can build up in the body and cause harm, but apparently requesting doctor strongly asserted it was needed. Previously Prof Tubs himself ordered it so ¯\_(ツ)_/¯

yes I’ve heard of the “MS hug” and quite frankly it is so ill-defined as to be meaningless. I am familiar with very sharp muscular cramps around my abdomen, and have had sharp tight contraction of chest muscles, also have had “T4 syndrome” which in my case causes a neuralgic pain radiating from my back through my nipple. I think what I’m describing is a mixture of bits of all that. All these things worse at night when lying in bed.

Before I came to the attention of a neurologist, I developed very sudden chest pain, nausea & weakness abruptly after I stood up for myself in a confrontation with a not very nice individual, thought it was just stress and went home to bed. Felt even worse next day, crashing chest pain, and dizziness, got myself to hospital where after a blood test I was told I was having a heart attack and would need to go to the cath lab and stay with them a few nights. Interestingly the cardiologist told me straight off what was wrong, and what wasn’t. My arteries were fine, but I had acute left ventricular failure and ballooning of the chamber, a condition known as Takotsubo Cardiomyopathy and originating in the nerves rather than the heart itself.

I can’t link to the multiple articles out there but here’s a screenshot of the header of one of them. Simply put demyelination in certain areas can lead to dangerous overstimulation of part of the heart muscle.

I find baclofen doesn't do what I want it to most of the time no matter how much I take. This warm weather definitely makes my legs like jelly if I stay out in it too. I think I don't need them in the heat too but cutting down isn't that easy on my high dose

For cramps and spasms baclofen works good for me too. Trying to walk in this heat kills me out. No strength to lift my legs and ankles. Sitting down inside until it cools down a bit is all I'm able to do now.

I reading about this device or maybe gimmick for vagal stimulation that might help with insomnia, depression, anxiety and autonomic dysfunction in MS

https://cybernews.com/health-tech/nurosym-review/

The site’s bots won’t allow me to post it as a link, but it does interest me. An expensive item, but if it really works it would be worth it. At this particular moment I could afford it.

Worth a read…

Novel drug seems to be particularly effective in controlling MS

You got some good results from that, good to hear. Boots and h&b have low dosage stuff in their stores and it's expensive. Few Irish companies selling stronger doses and expensive too. It works for some people definitely. I felt nothing from it, maybe need higher dose. Sativex is the 1 I want if I can get consultant to give it to me

Gilenya is supposed to be good DMT, pity it's not working as it should for you. I think it's 6 to 8 weeks for washout,not sure. Iv changed treatments a lot and no problems and it was around that.Your consultant might give you steroids to keep you stable if needed but nothing to worry about changing treatments. No experience of mavenclad but it's supposed to be good treatment.

After a couple of right falls today . Stupid brick pavements where the bricks are uneven because if looks nice . Never mind people on sticks that might drag their foot and trip over them . I thought I didn’t need as many baclofen in hot weather , big mistake . I already have a sore back from another fall and now I’ve strained something in my upper leg and my finger .

Not good having a fall, lucky you didn't break anything. Baclofen does help a tiny bit,I never feel it does anything but I'd definitely miss it if I didn't take it even in hot weather. You may be waiting a while to see a neurologist, contact ms nurse would be a good thing to do, might speed it up. Getting on a DMD is something you should think about

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?