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pre diagnosis

hello there,

my names David, im 25 and ive recently been to my doctor after quite a while of putting it off hoping my symptoms will just go away but no such luck. it keeps coming back and has been for at least the 5 years gradually getting worse every time. my GP thinks i may have ms and has referred me to see a neurologist.

im pretty terrified at the prospect of having MS. I have never personally known anyone with the condition and i really have no idea what to do with myself.

my legs are very weak i can only walk short distances at a time. my right hand is tingling all the time and my grip has totally gone. if i hold my hand straight my figures just fall away and separate away from each other the same thing with my legs if i try to hold them up within seconds they fall to the floor. Is this normal with MS? and is there anything i should be doing because right now i don’t know where to turn? :frowning:

Hi David, firstly…take a deep breath hun and try to calm the panic!

I know you’ll be feeling terrified and wonder where life is going to take you.

I’m a bit surprised your GP has taken so long to refer you to a neurologist!

Anyway, now that he has, things will get underway to try to diagnose you.

Having M S isn’t what anyone would hope for. But if it is that, then please believe me that it neednt mean your world will end !

Many, many people here do have MS. I don’t however, but I was wrongly diagnosed with PPMS for several years.

I have a rare condition called HSP, which mimics MS and has no cure.

Back to you…let your neuro do his job. It might not be MS.

But if it is, the best advice I can offer you is to get a good support network of health professionals ie physiotherapists, MS nurse, continence service should you have any bladder problems and OTs to give advice on living safely at home. Understanding friends and family can help too.

MS therapy centres are a huge help too.

Look after yourself the best you can. Pace your activities and take rests in between stuff.

This forum has folk who have been there already and are only too happy to share, care and listen.

Love pollsx

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hi david

it will be a few months until your neuro apointment.

meanwhile you need to manage your symptoms.

mindfulness meditation works wonders for me and many others, give it a go.

i’m reluctant to suggest any meds to you.

i really hope it is a less sinister diagnosis then ms but if it IS ms you could do worse than visit your nearest ms therapy centre.

i go to one every tuesday for Hyper Barric Oxygen Therapy.

newcomers are always welcomed.

we have a very varied range of disabilities too.

at the moment i wobble and limp.

please don’t work yourself up into a state, stress only makes it worse.

carole x

thankyou for the replys.

im in general a very physical person so the news has come as quite a blow to me about 80% of what i do involves physical activity . and im just left at a bit off a loss atm. i dont even know where to begin.

Just now its my right hand its just totally numb. i cant even write my own name. also my legs buckle and give way after 2-3 mins of normal walking.

my GP seems fairly sure it is ms although he cant say for sure. but whatever it is will require some major lifestyle adjustments his words not mine.

thanks again for the replys just hearing from someone who can relate makes a huge difference

Hi guys. So a little update I still don’t have a diagnosis yet. I have been for a MRI scan and I’ve just received those results today. Not such good news unfortunately :(. It has shown inflammation in my brain and spinal cord causing the numbness I was experiencing both previously and now . I am struggling to come to terms with all of this happening so fast. Does anyone have any advice they could give me that might ease the symptoms slightly. Right at this moment in time I feel I have a belt strapped round my waist that is rsuper tight and from there down my legs are numb and tingling. I’m having problems going to the toilet and feel the overwhelming need to pee all of the time. I’m at a complete loss so I’ve been sitting myself in my house for the past few weeks not going out as I’m unable to walk anywhere. Does this sound like MS? Nobody I know can seem to understand the feeling I have and I feel very alone at the moment :frowning:

Hi David, just to say so sorry about what you are experiencing and that you dont yet have a clear diagnosis. How long have you had your current symptoms for and have you got any follow up appointments arranged. Can you get checked out for a water infection or contact a local ms nurse for advice. Take care

Hi Abby thanks for your reply. I have been for an MRI scan recently and it showed inflammation in my spinal cord and brain. I also have a second appointment with my nurologist on the 15th of this month to get a second assessment and discuss possibly treatment. My symptoms come and go and seem to get worse each time. This is my first flair up this year and I had about 4 last year. I seem to get weaker and weaker after each episode. Being that I’m only 25 I feel I need to find some way of properly managing it so I can make the most of things right now as I feel it will only get worse over time. At the moment I am house bound due to my legs being numb and unwilling to go where I want them to. It is so frustrating hopefully at my next appointment I will get the diagnosis and I can move forward. I’ve had recurring symptoms since I was 17 and it was just brushed off by the gp untill about a year ago.

Genuinely this is the best thing I can say to you. Where you are right now is a horrible place, but you are ding the best you can by yourself. Stress in any form or adrenaline releases (fear,excitement) always place a big load onto your Neurological symptoms. Be kind to yourself and try not to let your brain run away with itself.

Your symptoms could be MS, they could also be a whole host of other things too and the person who will know the most, is the Neurologist. Keep a track of your symptoms, diarise even if verbally all of your symptoms and how long they last.

I find when I have relapses and or sensory issues, that sleep and eating well help… things I find the hardest.

We are all with you and wishing you well, it took me 20 years of symptoms and issues before I got my Diagnosis. I have been diagnosed and on DMD’s for four years(ish) now. At my worst, I lost my sight for a week twice and lost feelings in my legs for over six months.

Let us know how you get on.

So a little update. I was recently admitted to hospital for a week long stay after going to my second nurology appointment. My nurologist took one look at me and decided I had to go into hospital immediately to start a course of steroids and multiple other tablets 7 to be exact. I was the worst I’ve ever been I haven’t left the house for the 2 weeks prior to my appointment because my legs were completely useless and I haven’t had a bowel movement for over 3 weeks! Once I was in the hospital and started the steroids I saw an almost immediate improvement and after about 5 days I was up and walking around again I was still very limited but compared to how I was when I went in I couldn’t of been happier. I’ve been out of hospital now for 4 days and I’m still improving everyday. I also got my diagnosis for ms and that came as no real surprise it’s r&r and I’ve now got myself an ms nurse and should be starting a course of prevention treatment I’m about a month’s time. I know it can only do so much but I can’t wait to get started and start doing something about it. All in all it has taken about 10 months since my GP first referred me to the nurologist to me getting the diagnosis! From what I understand that is amazingly fast. Although it could have been alot faster if the gp had listened to me 7 years ago! Thankyou all for your help and replies it has helped me more than you know. Just knowing there are other people out there who can relate and understand what I’m going through. I count myself so lucky that my nurologist has moved things along so quickly.

Hi david, so glad you are starting to feel better, sorry things got so bad before that. You have done so well. Its all so scary at times. Glad youve got a nurse and things are rolling. Take care of yourself and keep in touch

Hi David

What a shock to the system, being hospitalised so unexpectedly. I’m really glad the steroids have done their job, and hope all the symptoms are still improving, you may find that improvements continue over the next weeks and even months. I usually found that IV steroids work better and faster than oral. The side effects, horrible metallic taste etc are mostly the same, but the effects generally seem better.

Have you decided on which disease modifying drug you’re going on yet? If not, have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid You’ll probably be discussing all the options with your MS nurse but it’s worth being au fair with the various drugs before you make a definite decision. (Unless you already have of course.)

If you carry on having trouble with bowels and / or bladder, you can be referred (or should be able to self refer) to the local bowel and bladder service. It’s so important not to get too constipated, there are products you can take if you aren’t ‘going’ enough. Many people take Movicol or Laxido to help. You can get these from your GP, they are sachets of a very gentle laxative which are mixed with water.

You could also get a referral to physiotherapy. Getting your core strong is particularly important. Ask the MS nurse how you can be referred.

Best of luck, and come back to us here when you need help and information.

Sue

Thanks for the replies :slight_smile: It was a massive shock to be put in hospital but a blessing in disguise as I soon found out. I am continuing to improve slowly but surely and by bowel and bladder function is almost back to normal thank god! I look like I was pregnant after 3 weeks of not going :confused: I have not yet been through the list of disease modifying drug with my ms nurse yet I have only seen her once before I left the hospital but I should get another appointment to see her sometime next month. I couldn’t ask for a better nurse to be honest first impressions of her were great. Thankyou for giving me that link I’ll be sure to have a look and get clued up as much as I can before next speak to the nurse. I do want to start some kind of fitness again but I’m unsure of what I should and shouldn’t be doing I don’t want to over do things any recommendations?

I have just started seeing a ‘nuro’ Phisio. I would highly recommend it if one is available. Lots of people seem to recommend cycling. Due to vertigo I am a little scared to go on a ‘real’ bike, but exercise bike is ok. I also still enjoy swimming. (I was a little scared the first time I went, after my new issues) but it was fine.

from what I have been told exercise is good for ms. Anything that increases heart rate. Just be aware that if you get hot you may not feel great for a bit. The Phisio has basically told me that it’s a case of trial and error for individuals to find a type of exercise that works for them (Ie, enjoy it and minimised negative effects)

when I was first diagnosed I emailed ms nurse to find out which DMD I would be eligible for so I could read up and make a discussion to discuss at my first appointment with her, to speed up the process.

Good luck, all the very best.

Hi David

As Sarah has said, physiotherapy is the best idea; if you can, get some physio with a neurological specialist. I see one quite regularly who works through my areas Community Neurological Rehab Team. In particular, try to get some work on your ‘core’ as this is what many of us neglected when fit and able only to find that it’s virtually non existent later (that’s my experience anyway). Swimming is brilliant exercise. But see if you can be referred to a specialist physio. (Ask the MS nurse, or your GP.)

When you look through the DMD decision guide, keep in mind that you won’t have a complete free choice. It will depend on how active your MS is (it’s likely to be classed as quite active given your recent hospitalisation), plus what prescribing centres have been set up locally.

Each disease modifying drug has side effects, so basically, it’s all about what drugs you are given the choice of weighed up in terms of what benefits you get from the drug versus the potential side effects. So while you could be given the choice between say Tecfidera and Lemtrada (someone else was recently saying they were her options). And these two drugs are complete opposites. One has wonderful potential benefits in terms of relapse reduction (Lemtrada), but potential side effects that are much worse. The other has only an average 50% relapse reduction (Tecfidera), but less risky side effects. One (Lemtrada) you take twice, once a year for two years, the other, you take daily forever, or until another better option comes along.

It’s all a confusing muddle which is why it’s a good idea to familiarise yourself with the drugs then be guided by your MS nurse.

Sue