My main symptom, and what has led me to a sped up neurology appointment is Lhermitte’s sign.
Reading about this on the internet is quite worrysome as it looks unlikely to have this without MS.
Other symptoms include pins and needles and numbness of legs when laying down. Carpal tunnel type symptoms in one hand, then the other. Confusion and difficulty finding words often. Incontinence issues. A little blip thing in my right eye. Intense heat/fire like pain across the top of my arms, chest and back. Cold hurts, such as air con, is like pin pricks all over my body.
I am really concerned, I have a whole life mapped out ahead of me, that I’ve only planned in the last few years and I’ve worked really hard getting to a place where I can realise my dreams. And then this is thrown at me.
My family are being supportive, but it’s difficult because we are in limbo, and probably always will be not knowing when the next relapse will hit, or how worse and quickly the symptoms will become.
I guess this essay TLDR is, could those symptoms be something else? Something curable?
Obviously we’re not neurologists here so probably not able to say whether the symptoms could be something else… it’s annoying, as you say, you are left in limbo for far too long. In case it helps, there is an MS trust video about being in limbo while waiting for diagnosis.
One thing I would say, though. There is not a cure for MS, yet, as far as I can tell. But there are some really effective treatments, especially for relapsing MS. So if it is MS, you will have treatment options and that could make a real difference. For many people, relapses are unusual.
I don’t know what plans you have made and what your health is like now. But perhaps avoid giving up on things before you have to - sometimes you can carry on after all, or with a few adaptations. Like you, I was someone who had trained hard for a career and planned a life out… but although I’m lucky that I can still do my job, I’ve realised that was being a bit naive in any case, MS or not: life is so unpredictable, so much can happen, rigid life plans don’t reflect this. So if you can think a bit about flexibility, building in some alternatives, that might not be a bad thing.
It’s also useful if you can learn to take each day as it comes, a bit. Again, I’m really bad at that myself. Perhaps it helps to do small, nice things each day and just try to enjoy that.
If the sensory symptoms are getting to you, you can go to your GP - before diagnosis - for help with the symptoms. I was put on something called amitriptyline, which seems to work for some sensory problems.
Hi, I read it too! I had l’hermittes sign too and it caused confusion with the hospital but in the end was anti phospho lipid syndrome. On warfarin for life but l’hermittes has largely gone. Have got very spastic legs as 2 years went by before warfarin given. But it’s a simple blood test. So yes. You can have hermites and not have ms. Good luck!
I so relate to this. All I can suggest is, try to narrow your focus to finding out what ails and what’s to be done about it. Trying to see the big picture isn’t likely to be a productive exercise just now. You will find a way of dealing with whatever comes along, but that’s for the future. One thing at a time.
I am very sorry that life has suddenly got so difficult and worrying.
I really appreciate you taking the time to respond.
I will admit I can be a bit belligerent, so changing from my plans is difficult, but I’m sure I’ll come to terms with it if needs be.
I’m usually quite the positive ‘what will be, will be’ person so it’s been difficult to struggle with this potential diagnosis.
I was given 10mg amyltriptine, and I can’t use it, it absolutely wipes me out and I have a job that includes safeguarding, where I need to be on the ball, although my new boss has been great, considering I started a new job a week before going to my GP. I also have 2 kids, one autistic PDA, so I can’t be exhausted. I have asked to have a med chat with my Dr, but it hasn’t happened yet.
I think I’m just in the shock and sometimes anger stage.
I worry about my kids and what will happen to them more than anything.