Neurologist- spms

Everyday living
1

Hi, hope Everyone is as well as possible.

Yesterday I went to see a neurologist (only the 3rd time since dx 25yrs).I was apprehensive as I’ve had a couple of bad experiences over the last few years with consultants (not ms related) but I needn’t have worried as he was really nice and though.

But I’m feeling devastated that he says that I now have spms, i feel more upset than I did when I was first dx! I think that the thing that has upset me the most is that he explained that a “big relapse” I had a few years ago was not a relaps but extreme fatigue brought on by physical and mental activity & that mental activity will cause more fatigue than physical. I have been taking amantidine to help with mental fatigue but it has had no effect so he said to take a second one at noon. He is also aksing my GP to perscribe something for muscle stiffness.

I feel I can cope with the physical disabilities and even the pain but the mental fatigue is more than I can cope with! The neurologist said that some people find meditation helps as you can stop thinking but I don’t want to stop thinking! I don’t want to spend my life trying to avoid taxing my brain too much. I always saw myself becoming more physically disabled but thought I would spend my time writing while resting my failing body (perhaps I’ve read too much a Dickens!)

If socialising & visiting family can cause so much fatigue that end up taking a month to recover, if simply watching a TV quiz show can leave me exhausted what can i do? I certainly can’t continue writing my novel or poetry (it’s taken me an hour to write this!)

I know I should wait and see if the second Amantadine works and that I need to try the other things the consultant suggested, low salt diet, vitamin D (as well as the to things that I asked him about which said wouldn’t do any harm, asprin & evening primrose oil) but my bleak feelings about life just got bleaker.

2

Hi Teddie, well we all have bleak days but hopefully things will even out. There are a lot of us know different feelings when we’re told we’re now SPMS. I suppose they have to call the various stages something. Your MS is what it is (never thought I would have something very exclusive) so try not to get too wrapped up in names. Linda x

3

hi teddie

it’s an unpredictable bu*ger but we don’t have to let it rule us.

take care of yourself, eat well, rest plenty and start to heal.

there may come a day when writing doesn’t seem impossible and then you can go for it!

i taught myself to paint and enjoyed it but i haven’t done any for about 9 months.

so that’s my aim for now.

don’t worry about the new label it’s still ms, just a different flavour.

good luck

carole x

4

Thank you both for you supportive words.

I’ve now pulled my self together (a bit!) and plan to talk to my gp about antidepressants because I come to the conclusion that nothing is more mentally fatiguing than feeling so low.

xx

5

hi teddie,

sorry you’ve been hit by what must feel like a huge change. i think you’ll very likely find that antidepressants will help make you feel less overwhelmed, they did so for me, and i was shattered all the time. i was amazed how mine (nortriptyline), once i was on the right dose for me, just levelled out my mood. not feeling so stressed certainly gave me more energy. when i first started taking them, they made me feel a little spacy, but that stopped within a couple of weeks. personally, i don’t have any negative side effects either.

i hope you have the same success.

wendy xx