I first went to my GP in February because of tingling in my arms and legs, they thought it was my iron and put me on suppliments for 3 months, now I’m near finished and it’s changed nothing. I went back recently saying how it’s only gotten worse, and they did a bone/calcium profile on me and those came back normal. I told them I was really worried about having MS, because I have a lot of the symptoms. They referred me to neurology as that’s the only thing they could really do. I was told the wait list is 3 years in northern Ireland.
I’ve been having tingling/pins and needles in my arms and legs every day, multiple times a day, since December last year. It’s become normal to me. It depends on my body’s position, but not like how you’d normally get them. It’s fast and intense, but once I move it goes away just as quickly.
I get them from sitting, (every morning on the toilet) crossing my legs, having an arm or hand above heart level, bending over, pretty much any position that bends my back and neck. Recently I’ve had a few episodes of the tingling coming on, but being more like pins and needles with the sharp pricks along my skin.
I also have scoliosis, so I’ve also been worried it could be my spine. But still, only answer is neurology.
I compiled a list of my symptoms:
-Bilateral foot drop,and single foot drop. Multiple times
-Pins and needles
-Speech problems (stuttering, slurring)
-Muscle spasms in face and stomach?
(Face is minor, stomach is very painful but rare.)
-Bladder problems (retention, voiding issues)
-Involuntary eye movement
-Maybe the MS hug? In 2020 I had 2-3 day long chest pain and tightness after a stressful life change.felt like someone standing on my chest
-Lhermitte’s sign? (Used to get brain zaps that was like a few second pang of electric buzzing in my brain, immediate loss of balance that faded in a handful of seconds)
-Difficulty swallowing(waiting on speech therapy referral)
-Difficulty hearing: I’m diagnosed autistic, so I have sound sensory issues and can’t filter out background noise in conversations
-Allodynia (random parts of my skin feeling pain from light touch)
I was talking to my friend who studies medicine in England, and said their neurology wait list is only 3 months. I want to eventually move to live with them, or move together to live in Scotland. But I have so much more going on with my life and my health that it couldn’t happen in the next couple years (I really wish I could move there, but I’m tied down by so many NHS waiting lists)
Because I don’t see things changing anytime soon, I’m considering going private. Now, I’m disabled. So I can’t work and I’m applying for PIP right now, and I’m also Transgender, so I’m paying for all my disability needs and trans healthcare with my benefits, or what I can spare anyway because of the cost of living crisis.
I have the savings, but I just get a lot of anxiety with spending big especially on something like diagnostic healthcare. I’m worried that I won’t have it, and it’ll feel like money wasted for nothing (although I really really don’t want to have MS)
I’ve looked into one place in Belfast that had prices on their website, and an MRI would be £500 minimum. That’s without the initial appointments with a doctor, although I think the same place has someone that specialises in MS. So it could easily reach £700 I’m sure
I haven’t been able to research into it more deeply, or anything further than an MRI in terms of testing.
So I want to ask, does it sound worth it to perseu a private diagnosis? I’m scared of deteriorating in 3 years, I’m worried about wasting time on a wait list. I don’t know what the next few years of my life will look like. I already have foot deformities that I think need surgery, and I’m on the wait list for the initial assessment for it too. I already walk with a cane because of the daily pain I’m in. And by the way… I’m 23. And no family to support or help me with this
But it’s so much money. If I should just wait a year and then move to somewhere with a shorter waiting list, would that be just as good?
Also, for anybody living in Scotland, what’s the neurology wait times like for you? I’m curious since I can only know from my friend living in Newcastle upon Tyne what theirs is like.
Lastly, the big thing I haven’t faced yet. If I did get diagnosed with MS privately, would I get fast tracked through for treatment? Or would I still have to wait 3 years?
Would my GP be able to give me treatment straight away? I have no idea how this could work. This is another thing I’m scared of, paying so much just to know I have a condition I can’t treat
Any and all advice is welcome! I’m so glad I found this forum