Still lost, feeling broken 😪

[Ali232]

Hey guys,

Me again. Following on from my last post where I had my MRI a week ago tomorrow , still waiting on results as I expected to be. I know this could be weeks more😪

The only person around me isn’t at all supportive, telling me to not go on about it and that it’s all in my head.

I’ve just started a new job which I’m managing okay on but ugh it’s just this waiting game, I feel like I’m living in limbo, im only 22 and I’m so scared of what could be coming. It took me years to come to terms with my Ehlers Danlos diagnosis and now potentially this

My tingling/prickling in the left arm is very on and off. As in it will come on for less than an hour and then disappear for what could be a day or even two. Sometimes the prickling spreads to random places.

My tremor (the first thing I noticed to start me off towards ms ) is still there. I will try and include a video. Idk if I can. I have a question, is MS tremor one that comes and goes or one that is consistently there in the hands? Cos mine is. It’s like my middle and ring finger twitch side to side when trying to keep my hands still.

I’ve had mild bowel issues for months , only ever of a morning but I put that down to diet and other things. My bladder has bothered me a lot today, just frequency but I don’t know if that’s because I’m actively thinking about it - it was never great anyway .

Also for years I’d randomly get this sensation that the “air had been knocked out of me” and kinda tightness in my chest , zero pain. Since all this worry has started I’ve been noticing it a lot more and worrying it’s ms hug🤷‍♀️

The suspense is just killing me, I feel so deflated, I feel like I can’t think about my future until I know the score with all this stuff.

As I said I am on 30mg mirtazapine a night and it does say on side effects leaflet 1 in 10 get tremor and 1 in 100 get parathesia but I just ain’t sure at all.

Had a dream last night about meeting back with the neurologist, that’s how much it’s on my mind.

Does this tremor sound like ms tremor? I know I need to wait for a professional advice which is what I am doing but just thought from people who’ve experienced it maybe. It doesn’t come and go like the ms tremor appears to do in some videos I’ve watched, it’s always there. I do have hypermobility as I said so I do sometimes think if my fingers shake due to the joints being so loose🤔.

Any advice at all would be greatly appreciated while I await my fate,

Thanks guys xx

[TheresaB]

Hi Ali232

Waiting on results, appointments etc. is no fun at all. One thing is certain, Dr Google, who tends to concentrate on the worst case scenarios, can send you down a rabbit hole of what if(s).

The hot weather can affect symptoms, increase intensity/frequency etc.