Hi everyone, first timer here in the forum. I’m not really sure why I’m posting ..I think just to feel less alone with this all really.
I don’t yet have a diagnosis. Been to see GP only one week ago who agreed to refer me to neurology. I’m so scared of my current symptoms. For now, they’re tolerable in the daytime, but night time is awful, I’m waking around 3 times in night with either severe pins and needles or dead hands/arms (could be one or both). It’s so distressing and I struggle getting back to sleep afterwards.
Gp has given me amytriptiline but I’ve not yet taken as scared of side effects and being able to function ok to do my job, look after my family etc.
I’m terrified these symptoms are here to stay..I’ve had them around 6 weeks now and feel I’m losing my mind! Feeling so alone too as the symptoms are invisible and even though I try to explain to my husband, I’m not sure he realises how badly they’re affecting me.
I am convinced I have MS. I’ve had symptoms of pins and needles/numbness on and off since around 17 years old. I’m now 44. My last symptoms were 8 years ago, so a long time! I had a negative lumbar puncture early 20s and 2 negative MRIs (last one in 2018 showed chiari malformation, which has never been followed up - seen once in clinic and they discharged me as no classic symptoms of chiari).
I’m worried my symptoms are here to stay now snd it’s progressive. My children are 15 and 12..so scared for all of us and what lies ahead. I’m always thinking about how I’m going to tell them the news when I finally get the diagnosis..I know it will cause them so much worry and upset.
Not sure if anyone has any words of comfort or reassurance ..I think I just need to hear from people who will truly understand
Hi there. I’m new to all this diagnosed in July with RRMS.
I think it’s totally normal to be afraid and have fear. Celebrate the little wins is what I’ve learned. To start with I thought my life had come to a standstill but I can now drive again (because my eyesight is back), work PT and go out. It does take more effort than before but so what if you get there. Sometimes I need a stick and sometimes I don’t. Live for today and cry when you need to then regroup and do something else. It’s hard but we’re still here and we’re still worth it.
Thanks Mel, I appreciate your reply and your optimism too..it’s good to read posts here and feel less alone. As many say, many of the symptoms are invisible and I just feel like at the moment I’m functioning day to day with these symptoms no one but me knows about and it’s an extremely lonely place to be!
For around 6 weeks now I’ve had the worst sleep, waking several times a night to numb hands/arms and shaking it off but I find it so distressing, I’ll sometimes just lie and cry or just lie wide awake thinking lots of horrible thoughts in the dark of the night when everyone else asleep..then get up to sort kids etc for school, myself for work, all in a few hours of sleep, just feeling awful
Will try my best though to keep the chin up, have to keep going for my family’s sake
Hey there - I’m so sorry to hear all of this. It is a lot to deal with at once. The onset of my MS was not dissimilar- i would be woken for hours each night with restless leg syndrome. It was very frightening, in combo with other symptoms. I was diagnosed with RRMS one year later and many of my symptoms have since improved considerably. Others are still tricky.
But you’re not alone with this. There are plenty of people on this forum dealing with the same physical and mental challenges as you are, and lots of kind and comforting and knowledgeable folks. Use them and any other networks you can find. Should it be MS, treatments have come a long way in recent years and there are many good drugs and therapies that can help you. Equally, i would also suggest - easier said than done, i admit - to try to slow the mind down. One thing at a time. A diagnosis need not be as doomy as you may fear and the mind can run away in every which direction. I find even five mins meditation each day can be a great help. Be patient with yourself, look after yourself - good sleep, diet, exercise where possible - and don’t despair. Take care, and I am open to DM if you think that could be of help
Thank you James for your thoughtful reply, I do appreciate it.
I’m glad some of your initial symptoms settled. Sleep is continuing to be awful for me, not so much of the pins and needles but waking with an odd heavy feeling in hands and forearms. A new symptom I can add to list is a sore left foot around heel area, only sore when I’m stood/walking. The fear I have is mostly around symptoms and worrying they’ll worsen/develop new ones and how fast I will deteriorate, but I’m guessing many feel this way.
I found last week I have high BP too, so now doing home readings but they’re staying high..there’s no wonder with how I’m feeling. I do take your point about slowing mind down. I work p/t and today is a day off, so I made myself nap an hour after sorting kids for school and that helped a bit in terms of emotional stability!
How long was your wait to be seen by neurology and to have investigations done? I’ve just come off a 35min call to neurology to be told not even triaged yet so they can’t tell me wait time
Have you been able to stay in employment?
I know everyone’s experience is different ..I need to learn somehow how to deal with the uncertainty..that may be where some meditation comes in!
Thanks again, I really appreciate the advice and support
