Possible MS?- altered sensations only?

Hi all

For those seasoned forum users I am sure that you must read a million of these queries about possible MS so a thousand apologies in advance for another one! I also know that you cant and of course wont diagnose someone and know how hard it is to get diagnoses of lots of things, but currently going a bit bonkers with anxiety , not helped by NHS being more or let ‘shut’ no matter what they say- already had lots cancelled appts which are part of my routine care so in real terms no onward referral to anywhere, or even blood tests is likely. Long first post though have edited is as original one was long and self indulgent . So, this is your 3minute get a cup of tea warning!!

I am mid 40s, with existing autoimmune condition (T1D, dx in 30s) and therefore probably mindful of any additional autoimmune diagnoses .Over the years have had lots of investigations for lots of things, mainly autoimmune/rheumatology as body generally got something or other going on

Pain down arm (no tingling) has resulted in referral for carpal tunnel but appt cancelled just so no further forward with this. This has been going on for a while.

However this past week , have had pins and needles in both arms . Started in the evening a week ago and was assuming to be honest it was related to the home working/ poor posture/seating being on laptop for 8 hours with minimal break. Tingling and burning was up outside of arm (eg ulnar nerve ish?). However in bed both arms burned and tingled like hell, then legs started too. Initially thought arms and shoulders was due to reading kindle/angle sitting up but obviously this wouldn’t affect legs. Have had some feet activity but did want to speak to Consultant re this, query if if peripheral neuropathy (though generally well controlled T1D albeit i know this isn’t any guarantee sadly) in hope he might give steer if not. Have private podiatry coming up as again appts all NHS cancelled just to get some view on this.

This sensation has however probably stayed on and off all week - periods during day when at work right arm affected, left ok. Some tingling at top of shoulder but has travelled into face and some strange sensation in cheek/side of nose. Its definitely an altered sensation though isnt like tingling or burning but just that am aware of my face- if that makes sense. ! Obviously hope against hope that when in shoulders and arms, its a nerve root problem but other areas now making me doubt myself re this.

I mentioned to my friend who said to me (reminded me) , you have thought you have had MS before. And she is right. I’ve kept a diary for other things and see note of this before but not noticeble enough to stick in my mind. But symptoms until this change in altered sensations have always had me think am just a hypervigilant paranoid wreck but now worrying a bit more.

I did fall at Christmas but assumed it was because was walking too fast and uneven pavement in the dark but now doubting that

In terms of symptoms, this would be main one and believe they are one of the earliest? I thought it would be constant, but on reading through helpful posts, can see it can wax and wane over the day. I suppose like most i am just hoping it is something else though I am pragmatic enough to know if it is there, it is there and am better to address it as it wont go away . However this is on a backdrop of no GP appts, no hospital referrals, increasing waiting lists , resuming appts for those already in the systems

Generally am functioning ok otherwise (not fatigued, walking ok, managing work full time, no other issues as yet) i might just stick head in the sand!

So in terms of the altered sensations and early symptoms , just wondering if you think i do have cause to progress it and if this kind of pattern sounds familiar? I cant think of any explanations for the spread of it though granted if things had been equal GP would likely to blood tests etc first I know.

Thanks for reading if you have stuck with it, should have warned you to get a biscuit with your tea!

EML

Hi EML,

I’ve read through without needing a cup of tea or a biscuit so far (!) and would offer a few thoughts … I would suggest dialogue with your GP would be worthwhile in this instance.

With the Covid lockdown situation easing, hopefully you will be able to get a GP appointment and you are likely to need to see your GP in person and go for blood tests etc. You may be able to email your GP and establish some useful comms that way, to start with, if an appointment slot is not instant.

Try not to go for the ‘head in the sand’ option ! I think it would be worth checking things out given the symptoms you’ve described and you’ll feel better for knowing one way or the other. There may be something there which will lead to a diagnosis of MS (or something else in that field), but equally I’d like to hope you may be lucky and it may not be. Either way I think it would be worth taking it to the GP and into an appointments process to check it out.

Hope that helps, do come back if you need to, and next time, I may well get a cup of tea whilst reading !

Matt

Hi EML. I just wanted to pop some of my (very little) experience in with altered sensations, I have been having very similar feelings to you but only in my legs…restless legs, tingling twitching, burning and a horrible feeling of numbness in my calves. I went to see my chiropractor who did a couple of nerve and reflex checks and although many of them came back negative my babiski reflex came back inconclusive. He has advised I contact my gp to get a referral to neuro. However I called them today and before they do anything they want me to have bloods done, they did say that anemia and b12 deficiencies have these symptoms. So hopefully I can get the bloods done soon. I have just recently had an MRI brain scan so just awaiting results. I hope you manage go get the answers you need and hope its nothing too serious, but maybe ask for some bloods to be done and possibly visit a chiropractor as it could possibly be a trapped nerve or musculoskeletal issues. I know I am locked up most of the time I visit my chiro! Take care Shieldmaiden

Thanks so much. My gps only doing telephone appt just now. I’ve had b12 etc checked before when went for ‘hot flashes’ on my leg- like someone was pouring hot water on my legs. Symptoms/ sensations were away for a week, which was lovely as they’re so preoccupying . However now back- tingling down arm and at neck. Again hoping for postural issues but now face prickling down whole side and forehead too. So distracting. An anxiety provoking. Not sure if can come and go like that- week apart. Would that mean relapse or just intermittent with the interim period being a week ( if it was MS)