I have my first Neuro appointment (telephone) on the 1st October and am counting down the days. I was referred in February 2020 after going to the drs as I had been waking smelling burnt toast, so vivid I shot out of bed and ran downstairs in the middle of the night, only to find the kitchen in darkness and definitely no toast being cooked. At the appointment the dr asked me lots of questions regarding numbness and I mentioned that I had been suffering with a painful, numb arm and hand which often goes stone cold, on and off for 2 years. I’d had steroid injections and been to a chiropractor and symptoms go away and then come back every few months. I also have occasionally sciatica also on my right side. Anyway he arranged for a CT head scan which I had a week before lockdown and that was clear. I was also found to be low on B12 so am now having 12 weekly injections. However the arm pain and numbness hasn’t gone away since March and has got worse, I did have a physio appointment and she thought it pointed to carpal tunnel but suspected that other things were going on too, so I’ve also been referred to a neck physio, which I’m due to have a tele appointment with tomorrow. Along with the arm pain I developed really painful sciatica down my right leg a few months ago, and more recently bad coccyx pain and numbness in my genitals. The other symptom is AWFUL tightness in my right ribcage and chest. I woke up with this again last night and it takes my breath away. I had taken naproxen before bed too so had to take co codamol as well. I feel so tearful today, I just really hope things progress with investigations after my neurologist appointment as I feel like a different person to who I was at the beginning of the year. Thanks for reading and sorry for the long post.
Now, I can’t comment on all of your post, but I can pick up on two things…
Firstly: Phantosmia (smelling smells that aren’t there), I get that from time to time when I smell food cooking, usually cakes. I’ve spoken to members of this forum before on the topic, one said he often smelled cigarette smoke, yet no one in the house smoked. Apparently it can be attributed to MS, but I suspect there may be other causes.
Secondly: The pain in your ribcage sounds like what we with MS refer to as ‘The Hug’, it’s correct name is intercostal muscle spasms, or cramp. It’s the small muscles between the ribs that move when the ribcage rises and falls as we breath. It’s very painful and quite alarming, but nothing sinister. The first time I had it I went to A&E I was so alarmed, they checked me out and soon put my mind at rest; I’ll just add that for me it doesn’t return too often. I’ll also add there could be other conditions that cause it, so as it’s chest pain I would recommend you speak to a medic and get it checked out. I am not a medic, I am just telling you my experience.
Your neuro appointment is only days away, so here’s a little tip - write out a bullet list of the important points you want to bring up, it’s all too easy to leave something out.
Thanks for your reply Ben. It really helped putting it all down it words and thanks for the info on the MS hug. I have mentioned it to my gp recently and they didn’t seem too concerned and said that I need to do as you suggested and write down all my symptoms so the neurologist has all my history. I’ve started doing that and its crazy how much I’ve probably just been getting on with over the last couple of years not ever thinking they could all be linked.
i also wanted to ask if anyone has had a clear CT scan but has ms show up on an MRI? It sounds like CT scans are rarely used when investigating MS. My gp has suggested that’s what the neuro will likely arrange and I’m hoping so.
Other symptoms have been tingling and numbness in pretty much my whole right side and recently the feeling like I’m stepping on a metal ladder barefoot on the arches or my feet. And when I get my sensation like the ms hug, it can go all the way up to my neck and jaw. Seems to last a few hours each time. And I wake up most nights with terrible pins and needles in my arm and pain.
i used to be a regular half marathon runner (I haven’t ran since February),and am such a busy determined person, I’m finding it hard to slow myself down a bit and listen to my body.
Sorry to hear you’ve had such a rough year of symptoms. Really hope the Neuro is helpful and is able to get to the bottom of it all for you. I know B12 can cause all sorts of strange neurological symptoms and it can take a while for things to return to normal even after starting supplement injections. So try not to convince yourself it’s one thing or another yet.
Hope you get an mri and any other relevant tests ordered at the appointment. Good luck with it all xx
Thanks for your reply You’re right, It could be something other than ms, especially with the low b12. I think the main thing that worries me is that they won’t be able to pinpoint what the cause of my symptoms are and I won’t get any answers. I can deal with most things as long as I have facts and a plan, if you know what I mean. Thanks for the good luck. Take care, Natalie.
Its so hard when waiting, and to sort wheat from the chaff. The B12 could cause the issues described and of course things like sciatica/pain can be related to muscular-skeletal problems . Smelling things can definitely be neurological - on spectrum of seizure type issues too but i would expect you would have other symptoms if so
The tightness round chest re MS Hug is obviously more classical symptoms but also may be referred pain from spinal nerves and muscle spasms in neck etc. As has already been said, could be lots other things but i know what its like to get an array of symptoms and start to join dots. I have had migraine issues for years, or so i thought, but now querying trigeminal neuralgia.
I have had my first appt, and in absence of being to say one thing or other they have ordered MRI - which is the least you want to begin process of sorting the wheat from the chaff!
Hang on in there, not long to first appt and pray Covid doesnt set us all backwards!!
Hi, thanks for your reply It’s great to hear you’ve got an MRI in the pipeline, I hope that’s not too long away and brings you some answers!
I also have migraines, really bad ones over the years with horrible zig zag aura’s (makes me feel sick just thinking about them!) and numbness in my face/jaw, which isn’t completely uncommon with them. But it does make you wonder how much is all connected. Unfortunately I did also have a seizure, although it was a one off in my teens (I’m 40 now), so I’ve got it all going on and it could be all separate issues but I guess I’ll just have to wait and see.
Best of luck for your journey and yes, fingers crossed Covid doesn’t delay things too much!
so had to take co codamol as well. I feel so tearful today, I just really hope things progress with investigations after my neurologist appointment as I feel like a different person to who I was at the beginning of the year. Thanks for reading and sorry for the long post.