Could this be MS?

[Orchid90]

Hi,
I am after some opinions as I am about to book a private neurologist appointment which is going to be super expensive and I’d like to use it well.

for the past month I have had some odd symptoms. Prior to this I was ok, bit stressed with work / life but who isn’t ?

anyway I started with some lower back pain , felt like my legs where giving out. In about 2 weeks it improved itself but my legs didn’t. I got ill with some respiratory virus and my legs got worse. started having pins and needles in feet, lower legs , lost temperature sensitivity on my left foot on few occasions. Also lost temperature sensitivity in my lower back a couple of times.
I have not fallen but feel unstable on my legs . can’t trust myself running as I can’t really feel the legs supporting me , it’s like my Ankle gives out , it’s like is loose. I have needed to hold myself to come down the stairs as I can’t feel my legs fully . This fluctuates , some days a better than others .
I got pins and needles in my hands on and off and yesterday it started on my mouth / face again on and off . Then it felt like vibrations inside both my thighs . Just odd stuff .

google tells me I have months to live especially with the tingling mouth/ chin

I am now thinking back in my life and I have had some odd stuff happening and disappearing building up a reputation of me being at best anxious and at worse just completely mental.

when I put my head back at the hair dresser , to get my hair washed, I get electric shock down my spine . That’s happened since I have memory, I just don’t go anymore because it’s basically torture. Or I need to make sure I do not rest it on the sink at all.

in the last 5 years I have had :

2 months of hearing loss ( reduced, I wasn’t fully deaf) on my right ear which ENT said was going to be permanent , loud music fault . It came back.

had 2/3 months of what seemed to be interstitial cystitis, got abx despite negative urine culture just in case . Anyway ruined my life for 3 months and disappeared.

few years ago ended up in hospital as I kept feeling like I couldn’t breathe , like couldn’t get a full breath in. Had some fast heart rate too. Tests to r/o clots , heart scan …no reason , stress . anyway it went away .

Went to the optician because my eyes were dry and annoying me, one more than the other , no cause found . I lived with eye drops in my pockets for another few weeks then it went .

another odd thing was after an operation I had to wee before being discharged and they would not let me go as they kept saying I was having too small amount or there was résiduel in my bladder . This went on for hours , after me drinking 3 litres of stuff . I dint feel it was any different than my normal self as I do have episodes where I I’ll have a wee and need another one soon after . I ended up having to top up the bedpan with tap water to get it to a decent volume or i think I’ll still be there .

now is pins and needles / odd feeling in legs . also very very tired , keep saying I feel like I have early dementia.

I have put it down to catching covid every time and having odd symptoms after .

GP have done blood tests , b12 , iron folate , vit d …thyroid ..my iron was 9 , normal is 10 above ..I dont think that 1 point is the cause of all my trouble .
I have been two more times but they said I have strength , I can walk . One nurse said my reflexes in my left leg were brisk but left it there . Take the iron and see you in 3 months . If I go one more time they’ll mark me as « the crazy one « so want to see a private neurologist but I don’t know if I need to mentioned all the weird self resolving things.

sorry this is so long but I think I needed to write it down . It might be another one of those weird things , but this particular bout it’s having an impact on my life as I find myself unable to walk long distance . My legs are like jelly or at times it feels like they are Velcro to the floor . . Weird just weird .
Contemplating getting some crutches just for a bit of extra support , but then they’ll label me as having an imaginary illness .
im a nurse , 12 hours on my feet , this isn’t laziness, I was struggling at work the past few weeks . Keep thinking I’m about to fall every step I take .

A neurologist sounds like a good plan for your muscular/ leg issues.

The other things you mention had me wondering how old you are and if are you on HRT? Had a lot of things like that during peri/menopause

My dear neuro has just said that the only symptoms of MS are weakness and loss of feeling. Therefore my constant struggle to control the spasms of my diaphragm no longer count. I was dx 30 odd years ago and it’s only now that I hear that muscle spasms don’t count; they used to be a major symptom!

I’m worried that your symptoms are similar to mine in all counts. I do have MS, it’s been dx through all possible tests, and no one, not even my neuro, is disputing it.I am also pretty sure that you’ve got more than a few months to live! I was dx 30years ago and have managed with all your current symptoms before now. I don’t have all of them right now, they come and go. Hearing, taste smell, facial stuff etc are in abeyance for me and being fairly normal.

I can’t really give you any advice, but I have found my life has gradually become more and more curtailed and there are things I took very much for granted which I can no longer do - knitting and sewing went a long time ago, but I learnt how to crochet instead; I think that’s the thing, concentrate on what you can do not what you can’t, find alternatives which are in some way similar to or can substitute for for what you can’t do, find joy in small things.

I went to Uni, met and married my DH then a few years after that, had dd, all after I developed ms. Life can still be fun and full, honestly!

Your iron level being 9 is very very low and can cause pins and needles. NHS ‘normal’ being 10 is absurd. Mine was 23 and I had dreadful pins and needles. I would look more into that if I were you. I hope you find some answers.

my ferritin in 50, if that’s what you meant . It was the actual serum iron that was 9 , normal they say is 10-30
i am on the iron pills now so will see , but I’m gonna have to take time off work as I just can’t do 12 h shifts nights / day right now .

Sounds like some of the symptoms I have. When my MS flares up. The electric chick down your spine is called L’Hermittes sign. I get pins and needles in my hands and random shooting pains. Also had weakness in my legs.
Make sure all other vitamin deficiencies are ruled out before you see the neurologist. Sounds like you need an MRI of your head. They may suggest a lumbar puncture. I refused one as my scans lit up like a Christmas tree. And I’ve assisted in many LP’s so no way was I having one. Neurologist said it wouldn’t add anything.

if it is MS it’s not the end of the world. Treatments have improved hugely in the last few years.

I still work full time on a busy ward and still do 12 hour shifts. Although I do get tired!

Ah ok, sorry, I thought you meant ferritin. Sounds really difficult for you - 12 hour shifts would be a killer !!

My DH has MS and there’s a fair amount of symptoms that you’ve mentioned that tally with the ones he had when he was diagnosed. However it could be something else - a friend had very similar ones and received a fibromyalgia diagnosis. If you’re concerned - and I think you are, for good reason - I’d push for an MRI and to be seen by a neurologist.

Obviously being seen under the NHS would be ideal, but if you’re able to go private it might be worth considering. FWIW, my Dh was diagnosed 10 years ago, was being bounced from pillar to post by NHS and was seriously unwell. Family helped to go private and he was seen in a week, diagnosed in a morning and then passed over to the NHS in the afternoon.

I really hope you can find some understanding - whatever it is or isn’t, it’s always better to know and face. Very best of luck to you.

Long Covid?