Last reply 1 month ago
Possible ms

Hi all I’m new here and just wanted some advice.
I’ve been having issues with mainly my legs for months now.
Pain in my hips and travelling all the way down.
I have what I can only describe as a fizzing feeling in my legs a lot of the time, it also feels tight and burning at times? (I hope this is making sense)
I’ve also started to get pins and needles in my arms and hands.
I’ve had an X-ray on my pelvic area. My doctor has just got the results and I have to go in to discuss them on Friday.
I came to this site as some concern my doctor had on my first assessment made me look up it all online 🙈 which has led me here.
MS is in my family, my aunt has it severely and also my cousin (my aunts brothers daughter)
I’m really anxious at the moment as my symptoms are increasing and I now have to wait until Friday to see a gp.
Any advice would be greatly appreciated.
Thank you in advance

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highlander
2 months ago

@lucy89
Hi welcome to the club.
From reading your post it would seem to be ms but you never know it could be something else.
Dr Google has a habit of sending you of in the wrong direction…. so becarefull of what you read.
If they suspect it is MS you’ll go through a few tests like blood work, MRI and a lumber puncture .
These tend to take a while to happen especially with the NHS.
Just try and keep stress to a minimum it really doesn’t help.
I’m sure you’ll get a few more words of wisdom soon from others…
Welcome again 😃


lucy89
2 months ago

@highlander

Thank you for your response, I hope I can get some answers soon as I’m definitely worrying.
I’m over thinking everything at the moment (work, finance, family)
I appreciate your reply 😊


helenjr
2 months ago

@lucy89 Hi! Hopefully this isn’t “welcome to the MS club” but if it is, then you’re in the right place. The next few steps for you are the most annoying, as getting the diagnosis can be slow, with lots of tests, uncertainty and worst of all, waiting! But please know, once you have a diagnosis, the NHS is well set up to support you, and give you meds to help with your current symptoms and to manage things long term.
For now the best thing you can do is to try and avoid Googling horror stories (it never shows you all the people living with MS and doing just fine), and try to avoid / manage stress.
My mindset during this period was “if it is MS, then it is. There’s many worse things it could have been”. It doesn’t work for everyone, but that’s what kept me sane.


lucy89
2 months ago

@helenjr

Thank you so much! These words mean a lot to me.
I’m hoping I will get into the frame of mind you have, I think at the moment I’m so worried and convinced that it is ms.
And I know it could be worse but I just feel so rubbish and tired all the time and the feelings in my legs is driving me mad. I just want to know for sure so I can start looking forward.


helenjr
2 months ago

Hi @lucy89
You could try asking your GP to prescribe Gabapentin. That’s what I was given to manage the tingling sensations even while they were still making my diagnosis. It took high doses before I felt the effects (900mg three times a day – and you have to work your way up to that level or you can get dizziness), but then it really helped quiet everything down while my system healed.
Don’t know whether they’ll give it, bit it’s a widely used drug for treating neuro symptoms so they might do.

Good luck!!


lucy89
2 months ago

@helenjr

That’s great! Thank you for letting me know about that, I will definitely mention it on Friday
😊


stumbler
2 months ago

Oh, @lucy89 , you’ve just turned 30 and this is happening. You must fear what’s in store for 40, when life begins…………. And, what about 50, or 60!

Using Dr Google to self-diagnose is never a good idea. It can take you places that will scare the living daylights out of you.

On the off-chance it is MS, it is no longer a death sentence or an express ticket to a wheelchair. Disease Modifying Therapies (DMTs), used to slowdonw or even arrest MS progress, have advanced so far over the last 20, nay 10 years. So, don’t look at your Aunt or cousin and say,” this is going to be me”!

Your hip problem could be the result of your legs problems. We’re human. when we get a weakness, we automatically compensate. In the case of legs, this compensation can put unnatural pressure on other joints and muscles. A Neuro-physio assessment, if you can get one, would identify any problems and prescribe simple exercises to address.

In the meantime, try and do some Yoga/Pilates hip stretches- you’ll find some on YouTube. But go gently. Make the stretches challenging, but not to the point of pain.

And, do try and chill out……….


lucy89
2 months ago

@stumbler
Hi and thank you for your advice, yes I have been thinking all of those things.
I will try my best to not worry too much regardless of the outcome 😊


stumbler
2 months ago

@lucy89 , you should never worry about things that haven’t happened, because if it does happen, you have to go through it twice! 😉


lucy89
2 months ago

Hi everyone just looking for some more advice.
I saw a gp on Friday who isn’t my regular doctor, he couldn’t see my file and told me to ring an msk clinic today. (Big waste of time) He sent me away with a prescription for co codomal.
I’ve called the clinic this morning and they have arranged for a telephone assessment on Thursday!
My symptoms have not been good the last few days, struggling to even walk today I’m so stiff. And when I rest I just get the fizzy feeling in my legs 😢 is there anything else I can do??

I’m at the end of my tether now


d1zzy
2 months ago

[email protected], really sorry to hear that your appointment was so unhelpful- but try not to panic, you are in good company! I suspect that everyone on Shift will have had a similar experience. I appreciate that doesn’t make it any better but it does mean you get a whole lot of sympathy and some good support on how to manage next!
Your next appointment is on Thursday, so can you make a plan for looking after yourself between now and then? Do you have family and/or work commitments that you are worrying about. My advice is to try not to look too far ahead, think about what might help today, and go with your instincts. If this is MS then your ‘symptoms’ could be different again tomorrow, if it isn’t then you still need to look after yourself and give your body the best chance of recovering from whatever is happening. The weird leg feelings are very alarming, but I think that worrying about them causes more problems! Try to divert your panicky thoughts, get a plan for the day, and remember that you are in a process that may take a bit of time to bring clear answers.
My legs are jumpy today. I am in the final stages of getting diagnosed and starting a treatment plan, but it has taken 4 years to get to this point. At some points along the way I felt convinced that I had MS and was very scared, at others I was just as convinced that I had a disc problem, and at other times I decided it was all in my imagination! The end result either way is that for 4 years I have had periods of good activity and mobility, but have consistently had weird legs….. I still work full time and now feel good about having got to this stage without cracking up ( hubby might disagree a bit there🤪) but there have been awful periods of waiting for appointments and some reassurance that someone somewhere knew what was happening. Hang on in there, and try to keep a focus on what you can do to retain some normality for yourself. Staying positive is so hard at times, but you will still be you, whatever happens. I hope your day gets better, and that you can get a list of your symptoms and questions ready for the phone assessment on Thursday. Good luck Dx


lucy89
2 months ago

@d1zzy

Thank you for your advice! Very helpful.
I just feel like I am going mad. The feeling In my legs is driving me crazy, and I feel it in my arms now too..
my hands shake all the time and it’s just getting me down.
I honestly don’t know what to do, it’s been going on for months now and still no closer to an answer, I’m getting pulled from pillar to post with no outcome 😩


stumbler
2 months ago

@lucy89 , now, if I’ve got this right, you haven’t even been referred to a Neurologist yet?

If that is the case, then the way you have been treated by your last two appointments is tantamount to Professional Misconduct.

The first appointment was terrible. Referring you to Dr. Google is something that we don’t recommend, so why a GP would think it’s a good idea is beyond me.

The second appointment, with no records available is just negligent. Asking you to self-refer to an MS Clinic, without a firm diagnosis, is a dereliction of duty. I didn’t know that these places did self-referral – are you already registered?

The prescription of Co-codamol for neuropathic pain is inappropriate and won’t touch your symptoms. Now, I’m not medical at all, so I make be talking out of turn here.

I suggest that you call up the GP’s Practice and ask to speak to the Practice Manager and say that you’re not happy with your last two appointments. There is a familial connection with auto-immune conditions, so you should have been taken seriously straightaway.

I’m sorry to put this all on you, but if you’re polite and apologise for raising what you feel is a problem then you should get somewhere. You shouldn’t have to come to a Forum for advice of this nature, even though you’re most welcome.

Let’s hope we can get you on the right track. Do let us know how you get on. 😉


lucy89
2 months ago

@stumbler

Thank you, I have called my regular gp and booked another appointment (Wednesday is the earliest) I’m going to insist I’m taken seriously this time. I just cannot go on like this


stumbler
2 months ago

@lucy89 , why don’t you show my comments to your GP and see what he says? Or is that me being evil? 😠


lucy89
2 months ago

@stumbler

May not be such a bad idea!

Anything to help


wobbleone
2 months ago

I fully agree with all the above having experienced a lot similar in the past.
Just one thing though, you say the latest GP has referred you to a MSK clinic.. this is for musculoskeletal conditions not MS.

Please do follow up with your GP and request (strongly 😬) a referral to a neurologist, it is your right. Good luck x


stumbler
2 months ago

@lucy89 , aha a musculoskeletal clinic (thanks for pointing that out, @wobbleone )! Looking at their website details, 90% of their patients waited 26 weeks for a referral at the Royal and Castle Hill!

And, I’m quite happy for you to share my comments with your GP. I’ll even share my name and contact details if they want a chat………


wobbleone
2 months ago

@stumbler .. my pleasure 😉..
unfortunately, they like to work through the pain killer, physio etc route first before considering anything else but with such impacting symptoms @lucy89 you need referral to a neurologist and for things to move quicker, wish I’d had stumbler to back me up 10 yrs ago.

Please do take him up on his offer.

Your symptoms sound neurological, whatever the root cause.

Make sure you tell your GP you can’t take anymore and you “want” to see a neurologist. x


lucy89
2 months ago

@wobbleone @stumbler

Thank you both so much for your help

I will be sure to let them know I need to see a neurologist. I honestly feel like I’m going crazy most days.


stumbler
2 months ago

Thank you kindly, @wobbleone . I wish I’d met me 10 years ago too. Things would have been so different, I’m sure……

Hindsight, what a worthless attribute! 😉


wobbleone
2 months ago

@stumbler
Whilst hindsight may make us suffer twice..it hopefully gives foresight to others .😬
🙃


lucy89
2 months ago

Hi all.

Just a quick update
I have seen my gp again today and he has booked me in for blood tests and is referring me to a neurologist!

Mixed feelings now 🤷🏻‍♀️
Happy that it’s going ahead and worried at how long it takes for an answer and what the answer will be.
But I just want to thank you all for all the advice, it’s really helping me.
@wobbleone thank you for your private message yesterday it’s lovely knowing people are happy to help.

Thank you all ❤️


stumbler
2 months ago

@lucy89, well, that’s progress.

Neurologists seem to be very busy, so there may be a waiting time for any appointment. If this is the case, and if finances permit, you may want to consider a private consultation to expedite things. You can then switch back to the NHS lists.


lucy89
2 months ago

@stumbler

Hi, I have thought about this, I have private healthcare through my work but I just need to figure out how to use it.
Because time depending I will go private if possible.
I am so sure now I need to get an answer


stumbler
2 months ago

@lucy89 , a quick call to the Healthcare Insurance company normally gets the ball rolling. The when they OK the consultation cost, let your GP know and they will contact a private Neurologist for you.

You’ll be glad you took this route. It’ll probably save you months


lucy89
1 month ago

Hi everyone,
I thought I’d just send a little update.
Had bloods done recently which all came back pretty ok apart from lipids which were slightly high.

I have also received my neurologist appointment! Which will be on September 26th.
The heat is bothering me quite a lot as I’m sure it is with everyone in the uk 😊
I’ve also been getting really sharp burning pains in my right wrist very often. Does anybody else have this?

Hope everyone is doing ok
Xx


highlander
1 month ago

@lucy89
I’m glad you’re making some headway..,
And yep most of us at sometime or another have weird and wonderful stuff happen especially tightness, cramps and pins and needles. To name but a few.
Try doing gentle stretching exercises that helps sometimes.
Keep 😀 it helps 😄

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