Hi all, soooo glad I found you!

Everyday living
1

Hi everyone, I’m new here but have been reading through some of the posts and you all sound so supportive and friendly I thought you may be able to help me. Long story short(ish)…

I think it began in the summer of 2012 (I know the weather was hot as it made me feel worse so I stayed inside in the cool) I was unwell for a few months. I couldn’t put my finger on what was wrong, just unbelievable fatigue, felt ‘weak’ and couldn’t think properly. I would fall asleep at least once a day - not good when you have a toddler running around - which was so unlike me as I’ve never been a good sleeper. Can’t remember if there were any other symptoms apart from my left leg gave way once, as if it just wasn’t there when I tried to walk. I just put it down to the stress of being a single Mum of three catching up with me and gradually started feeling better (and staying awake all day!)

Fast forward to September 2013 I went to GP with pain in my left forearm (kind of like a blood pressure cuff at it’s tightest but without release) and mentioned that I get weakness in both hands and legs sometimes. Can’t grip with hands or open things or write and legs go to jelly so I have to stop walking or sit down quickly. As time went on other strange things were happening too - the fatigue returned with a vengeance, I couldn’t think properly, concentrate or remember things and kept getting my words mixed up or lost completely. I got sporadic shooting pains, tingling and loss of sensation in all my limbs (mostly left), my leg gave way again and much more frequent urination.

My GP had referred me for nerve testing for forearm pain but also to neurology after other symptoms appeared and discounting deficiencies etc with blood tests, saying if he had to pinpoint he thinks it sounds like MS.

As you all obviously have experience of symptoms/tests etc I wondered if my symptoms sounded familiar to anyone and how long the wait to see a neuro tends to be. I’ve been driving myself crazy thinking myself round in circles as I’ve no one to talk things through with and would love to hear from people who know what they’re talking about - my dear old Nan always said experience is the best teacher.

Many thanks for reading and sorry for such a long post,

Farley

2

Hi,

I have problems with speech, thinking, forgetfullness,tiredness, and walking.

I can’t walk far, I didn’t think about it the other day but wore my boots out to go to the shops, then on to bakery and back home. Well half way back and my right leg/ankle began to get weak, and ended up clinging on to my husband, got to the park and I was holding him and the fence to the park. Sat down for a bit, and then stuggled on home. That was upsetting and embarrassing cause loads of people just staring. Learnt my lesson to wear trainers lol.

I had to chase up my first appointment, but can’t remember how long I had to wait.

Mel xx

3

Forgot to mention in last episode I also had vertigo, bad balance and my arms and legs felt really heavy and I couldn’t move very fast - anyone else get any of these things?

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O yeah my balance is terrible as well xx

5

Thanks for replying Mel. Yeah I’ve been sticking to ugg type boots as my balance is off and they just seem to be the easiest to walk in. That must have been awful for you, the weakness in my legs usually subsides enough for me to walk if I sit for a few minutes, my hands seem to hold me back more. I know what you mean about people staring though, I have been known to dash over to benches and promptly squeeze myself into non-existent spaces between bemused shoppers when my ‘legs go’. I do get some funny looks when I walk off a few minutes later like nothing’s happened! Lol How did you go about ‘chasing up’ your appointment? Did you go back to the gp? Thanks x

6

Hi Farley

welcome to this wonderful forum where the talented gurus on here have helped to keep me sane over the past few months!

A lot of what you say struck a chord with me, particularly the left leg giving way and feeling like it 's not there. (I’ve often referred to this as feeling as if my leg belonged to someone else!)

Looking back my first real physical symptom was a weakness in my left arm - you know like the feeling when you’ve woken up after sleeping on your arm and it’d dead, and you have no control over it.

The fatigue is awful one of the hardest things I find to cope with, and also not being able to concentrate on things and being forgetful. I now have to write down everything important I need to remember.

The first neuro I saw was a waste of space and I left him in tears, my husband asked for a second opinon and I met my Neuro who is amazing.

The best advice I can give, is not to google your symptoms because you will end up thinking you have any of hundreds conditions. If you don’t hear soon about any appoinments then get on the phone and start nagging! (My husband is like a dog with a bone and has got me in sooner for some appts!)

Wish you all the best

Freckles xxx

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hi farley

you’v come to the right place for support and loving kindness.

your symptoms sound horribly familiar and probably do so to lots of others on here.

so important to bear in mind - if you get ms diagnosis, its not the end of the world.

life goes on although at a slower pace.

try to be patient as you wait for a neuro appointment.

ask your gp how long he/she expects it to be.

if it goes on too long ask for it to be chased up.

take care of yourself and your 3 children

love carole x

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Hi freckles and carole, thanks so much for your replies. Freckles I too find the fatigue and cognitive problems the hardest to cope with, I finished a short course before xmas and although I managed to get there every week I couldn’t concentrate and now have no clue what I’m supposed to have learned! :confused: I also get the dead arm and leg, still do now infact even though I’d consider myself better. Do you get little symptoms occasionally even if you’re not ‘relapsing’? Thank you both again for your kind words and support x

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Hi Farley, welcome to our world. This is the place for support, information, kindness and understanding. We all suffer in different ways but have a lot in common. I can relate to your various symptoms and believe me I can understand how you’re feeling. Press on for your appointments. We all have good days, bad days, indifferent days and up and down days. Keep us all up to date on what’s going on. Linda x

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I often get a numbness in my left arm and the back of my hand feels like its burning. This happens almost on a daily basis but I think everything is worse when I’m tired. (Which is pretty often!) As to the cognitive side of things, I work in a primary school so really have to be on top of the activity I’m delivering to the pupils!

I’ve had three major relapses in the past two years and am on meds to control most of my symptoms, but some do persist despite these. They’re not too bad and I’ve just learnt to live with them. Also I think that I have ms quite mild compared to lots on here.

It’s really important to remain positive I find humour a great tool for coping with things. Maybe I’m just bonkers and don’t realise it!!

Best wishes

Freckles xxx

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Hi, welcome to the forum from me too.

Yep, your symptoms do sound very MS like. But it could be lots of other things too. Waiting times to see neuros vary widely.

You could always try ringing his sec and she will be able to give you some idea, as to when you`ll be seen.

Try not to focus too much that it is MS.

I did that, as I had symptoms just like your`s. I presented very PPMS like, but after 16 years and just as many neuros, MS was finally discounted and I am still unaware as to what is wrong with me. I only have a possible diagnosis.

luv Pollx

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Hi Farley

Welcome to this lovely site where you will get all the suppot you need whenever you need it. We also have lots of laughs on our good days!!

I have made loads of friends on here since diagnosis in 2005 and I am sure you will too.

Look forward to chatting with you.

Shazzie xx

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I kept pestering my gp, then I found out about the neurologists secretary and kept phoning her. xx

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Hi Farley

As LindaH put it, ’ we all suffer in different ways, but have a lot in common. That’s what is very interesting in a weird kinda way- and so many of us have also experienced a somewhat convoluted journey, before we gain a final diagnosis. I think I was very lucky. My diagnosis was arrived at very quickly.

June 5th 2013, I woke up initially thinking that I had suffered a TIA (mini stroke). My GP sent me straight to the hospital for tests. So the half marathon I was due to run in on Sunday 7th was no more

June 12th, I see a Neurologist who runs through standard tests.

June 17th, have MRI scan

June 20th My GP calls me and says, " I’m really sorry, it’s not the news you want to hear. You have Multiple Sclerosis". I respond, “That’s OK! At least I know it’s not all in my head. Well it is, but you know what I mean”.

June 29th, I see a specialist MS Neurologist. He tells me it’s Relapsing Remitting MS. He shows me the MRI scan. It doesn’t look too good. What adds to my horror is when I show him the MRI scan that was taken of my brain in 1995. The MRI had led to no diagnosis of anything. I was told at age 26 to ’ Go away and carry on with your life’. He slaps the MRI on the screen and states quite emphatically, " You had it then too". I could see it myself too, but, there was hardly anything really. Now, it looked huge and white. Like a newly formed continent on my brain.

Well, at that point, you could have knocked me down with a feather!

But, when I look back now, it all makes sense. I was hardly ever ill, but my husband and I would laugh because when I got ill, I got properly ill. There were only 4 occasions, but they were the times that I needed the GP.

  1. The neurological episode in 1995. Affected my coordination.

  2. The Vertigo/ Acute Labrynthitis in 1999. That was sheer hell!

  3. Bladder problem in 2008 . Bladder malfunctioned. Get admitted to hospital overnight. Have a cytoscopy and they can’t find anything. It returns to normal after about 8 weeks; like nothing had happened.

    1. My left leg started playing up. It was affecting my running. I remember saying to the Physio, " It’s feels weird. Almost spastic". I had 3 sessions and lay off my training and I return to normal, like nothing had happened.

And here I am January 2014. I’m now a member of the MS club, although I would rather have joined a Book Club or Art Class. I’m back into my running (more than ever really). I’m more determined than ever I was hoping to run a personal best in my next half marathon in April. Whilst muscle spasms and spasticity were my worst symptoms during my last relapse, (July- August), I would say that fatigue is pretty well up there still, together with balance issues. I think my rock climbing days are well and truely numbered.

I fight it all with fierce determination, but it’s very, very hard. After all that, you may still be spared, so stay positive.

Good Luck

Tracyann xx

ps. And you thought your post was long’ lol!

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Thank you all for your replies, I’m looking forward to getting to know you all better. Thanks for the advice, I will bear it all in mind. I’ve begun what seemes like a very long journey and I don’t know when/where I will arrive but I’m sure that having such lovely fellow passengers will make this turbulent ride more bearable. Farley x P.s traceyann I loved your response to your diagnosis lol Freckles I think you probably are bonkers, it’s a welsh thing, we all have a touch of it :wink:

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Hi again Farley!

Glad it made you chuckle. It was kinda surreal. I went to the surgery on an emergency appointment and saw the GP on duty at that time. He wasn’t my actual GP at that time, but he is now. It made sense to switch to him, as I had not seen my assigned GP, since joining the surgery in March 2013. We both chuckled ourselves; albeit rather awkwardly. After all, it’s not the sort of news you want to enpart on your patient, is it ?

Looking back, I did take it very well- a little too nonchalantly, in hindsight. It wasn’t until a week or two later that the tears started to flow…and flow…and flow. Thankfully, I brushed myself off pretty quickly and then got into ‘fighting mode’. The first music track I listened to (cos I love my music- all genres!) was ‘The Hitman’ by Queen from Freddie’s last final album, Innuendo. I played it again and again until my true grit had returned fully.

Anyway, my glass is always half full. “It is what it is and you have just gotta roll with it, haven’t you”.

Stay happy and I hope you don’t join this club too!

Tracyann xx