t-luv 28/11/17
Last reply 4 months ago
Introducing myself

Hiya, I’m a newbie here so thought I’d introduce myself. I’m a 45 year old woman who has recently been diagnosed…actually not officially but without doubt!
6 years ago, I woke up with pins and needles in my left arm and assumed I’d slept on it and it would wear off soon. It never has. Over the next few days the pins and needles spread to my whole body and I couldn’t stand up. Initially docs thought I’d had a stroke, but tests proved otherwise. As gradually it had appeared, it then started to disappear with the exception of my left arm, which I have learned to live with. I had many tests and 2 MRIs but never got to the bottom of it.
One thing that became clear though – I appeared to have super powers! Never caught the sickness bugs or colds that were doing the rounds. The only discomfort I ever felt over the next few years was occasionally I’d get a real tightness around my body. Docs didn’t know what it was so I just called it “my corset” and wait for it to pass.
I never suspected MS until I was watching Hollyoaks and Nancy presented with similar symptoms. I googled it and still thought “Well it can’t be that or it would’ve shown up on my MRI scans” ! So I carried on regardless.
Earlier this year I noticed a new thing. My blood felt fizzy. It was random, some days more times than others but every day. Then the pins and needles came back all down my right side.
Now I started to worry!
After about a month of fizzy blood, I suddenly realised it always happened when I looked down.
L’hermittes sign.
And that’s when the fog cleared!
Back to docs and it was like a light bulb had suddenly been switched on, so more tests more MRI scans, and now just really waiting for absolute confirmation.
In all honesty it’s a relief to finally be getting some answers, a bit disappointing that I’m not actually a super hero though!!
But also an explanation to my clumsiness/forgetfulness that I thought were part of me getting old!
I know I am so lucky not to be in any pain and sometimes I feel a bit of a fraud as nobody would know just by looking at me, so that makes it hard to talk to people that have little understanding of MS.
I hope by talking to others in the same situation I can get a better understanding myself, especially when it comes to new symptoms and not knowing whether they are part of MS or something else.
Because I read somewhere “the biggest cause of death in MS is assuming a new symptom is MS”

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stumbler
7 months ago

Hi @t-luv and welcome.

Diagnosis of MS always seems to be a problem. Possibly because the tests, e.g. the MRI Scan, do not show everything which is going on.

But, yes, the “MS Hug”, L’Hermitte’s sign (although I prefer fizzy blood!) and the sensory symptoms all point to MS. Even this isn’t conclusive.

You are quite right in that we should never assume everything is MS-related, Your MS Nurse, if you have one assigned yet, is a good sounding board for anything weird going on.

You seem quite level-headed about what’s going on, so, eat healthy, live healthy and avoid stress/worry. πŸ˜‰


t-luv
7 months ago

Hi @stumbler
Thank you for your reply!
No, I don’t have an MS nurse and as yet don’t have my next appointment through for the neurologist.
I’ve been reading up on natural ways to help myself and have made changes to my diet, I eat organic as much as possible, take vitamin D and B12, magnesium and probiotics and to be honest it has relieved my symptoms significantly, although I realise this may be coincidental!
My blood is still fizzy though! I sometimes put my head down just to test if it’s still there but on the whole I avoid doing so if I can! 😁
The hardest thing is trusting my hands to do what they’re supposed to do. I drop a lot of stuff or sometimes my fingers twist or clench without me realising that they’re doing it. I have to proper concentrate on everything these days so no more multitasking! πŸ˜‚
But I have a very positive outlook, there are millions of people worse off than me!
I really only have to deal with a bit of frustration and picking my dinner up off the kitchen floor!


petlamb
7 months ago

A warm welcome to the site @t-luv 😊

I can only reiterate Stumbler’s wise words – especially the bit about avoiding stress and worry. It’s great that you have such a positive outlook, that will help you no end.

BTW, great description of L’Hermitte’s sign – “fizzy blood”! You hit the nail on the head there.

Keep being positive!

Suze xx


t-luv
7 months ago

Thankyou @petlamb
One thing I’m unsure of is a feeling I get in my tummy. I asked GP and he didn’t know so I’m saving it for neurologist. It feels like extreme butterflies – or the first flutters of pregnancy (and absolutely no chance of that! 🀣) but it’s constant. It could be anxiety (as Dr Google suggests) but I’m not anxious about anything as far as I’m aware (although with my memory it’s possible I forget what I’m worried about!)
Is it something anyone else experiences?


rachaellouise
7 months ago

@t-luv

Hi there. Just wanted to say hello to you. I’m a newbie to ms too . Be kind to yourself, listen to your body , be honest with yourself but never put limits on yourself – you can do anything you want in life , you just may have to adapt and do it differently but you can still do anything . I think our way actually is probably better for anyone anyway ms or no ms. We have to pace ourselves etc wouldn’t that benefit anyone really ? Hare and tortoise . Who won the race ? It wasn’t the hare

honestly be good to yourself. It’s difficult feeling shit but you can do this , even when feeling shit.

Also those stories scare the hell out of me to about symptoms . Life is unpredictable but hopefully really bad things are rarer

Sending you big hugs πŸ’ͺ😊xx

Rachae l xx


rachaellouise
7 months ago

@stumbler – welcome back my fried , hope your feeling a lot better . Xx your always missed xxπŸ’•


stumbler
7 months ago

@t-luv , the NHS moves slowly sometimes. It is possible to locate your MS Nurse, using this site:-

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

And, it is possible to self-refer. Always worth a chat…………

@rachaellouise , yes, I’m back, but I need to sort out the “jelly-legs”! πŸ˜‰


t-luv
7 months ago

Thank you all πŸ€—πŸ€—


cameron
7 months ago

Things will look different when you have the support of a neuro team and start treatment. In my experience, that is the moment when it becomes possible to start taking back control of your life. Big hugs and let us know how you get on. We’ve all been there, xx.


us-emma
7 months ago

Ms can affect the motility of the bowel (constipation, delayed stomach emptying) and that might lead to nausea- unsure if this is your butterflies.

It could also be hormonal- since you mentioned pregnancy. You might have your FSH and LH checked via labs.

If you have had steroids recently this can be a side effect of those drugs on the adrenal glands, but this would not likely last more than a few weeks unless the glands suffered a significant insult- very uncommon, or could be due to a different insult to the adrenals (glands that sit atop your kidneys and release cortisol and other hormones). This can also be detected by a blood test, but likely you would have more symptoms- see Adrenal insufficiency if you want to cross check your symptoms.

Track what makes this symptom better or worse (time of day, did you just eat, is there a pattern?). Tracking any symptom in a diary and presenting that data to your doc is extremely helpful for an accurate diagnosis. You are a Great Historian by your description of symptoms over the term. This will aid you immensely.

Best wishes,
Emma


celan2go
7 months ago

Welcome! You find a wonderful and very supportive group of people here. Wow, sux years to get it diagnosed, yikes! I was diagnosed in 2002 when I was 46 (relapse/remitting) and had a flare up in 2004, but nothing (Thankfully!) since then.. As I recall I went to my PCP complaining of pins and needles and sudden weakness in my left side. He sent me to a neurologist, had an MRI and some kind of electro-stimulation test.It took me 3 neurologists to find the right one. And I ended up with my current neurologist when I was in the hospital while having a relapse. (I was between neurologist when the flare-up occured. And I ended up with a gem!)
I’ve been in remission since 2004, and just recently had an MRI to see if there have been any changes.

Anyhow, welcome!


seanachai
7 months ago

Hiya and welcome

Very similar story to mine bitter sweet relief getting diagnosed.

Stay positive superwoman x


t-luv
7 months ago

Thank you all for your replies. I have now had a letter confirming MS with the results of my MRI. I have bright spots on the brain and a new bright spot within the cervical spinal cord (which suggests I already had bright spots there before…the letter kind of makes it sound like I already knew I had MS which I didn’t. Unless I forgot πŸ˜‚πŸ˜‚ which is unlikely but not totally impossible πŸ˜‚πŸ˜‚).
However, the letter goes on to explain that there is no sign of active inflammation on the post contrast scans, so that’s good, right?
I still await my next appointment to discuss in more detail x


asht1994
4 months ago

Hi @t-luv
Youve been through the same as me, i had pins and needles in my left hand and doctors thought it was a stroke, and like you said about nancy in hollyoaks thats how i thought about it too. You were diagnosed around the same time as me too. Its nice to know how similar its been instead of just thinking that its just me going through that 😊


grandma
4 months ago

Hi @T.luv I’m an old trooper (61) and live in ‘the potteries) Mum worked at Wedgwood for 40 years so have more China dinner services than you can throw a stick at, have now changed it all for plastic cos I have dropped and broken so much so you are not alone! You will learn over time what needs to be changed and wha doesn’t it takes me ages (one fingered and to an ex shorthand typist very frustrating) to put even a message on here, but we’re worth it.

haha, welcome. I am having my first cold in 8 years, I just don’t get them anymore! A colleague (with an autoimmune condition) and I In the office never get colds, sickness bugs etc but the rest of the office are always taking time off ill!!

Your initial symptoms are almost a reflection of what mine were……..strokes, trapped nerves were all banded about!!

You’ll enjoy it here, friendly bunch!


vixen
4 months ago

Hi there @t-luv, strokes, fizzy blood, all of the above! I get you too when you feel like a fraud. I don’t get pain thankfully but I guess that’s no real reason to celebrate, given that the burden of diagnosis is still there. A year on from diagnosis, I have moved on a great deal and made changes to improve lifestyle. In some ways it can be a bit of a gift to arrive at a diagnosis in middle aged times and have the ability to recognise your own strengths and look for innovative ways to deploy them. Good to meet you x

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