Symptoms.. diagnosis

New diagnosis and before diagnosis
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Hi there I really hope everyone reading this is well :slight_smile: I’ve been reading through posts for the last few weeks and thought I might feel better writing /asking some questions as I’m going around in circles with worry and have quite a few questions :see_no_evil:

Im a 31 year old single mother to a gorgous little girl :blush:

Symptoms: I’ve had balance issues for around 10 years now, feels like I’m swaying , off balance, struggle with walking it feels like I have stones attatched to my feet (heavy) but I have always tried to hide this and walk as “normal “ as possible but friends family have always mentioned it. Always falling or dropping things . Tingly numb. It feels like I have to tell my legs what to do , I feel like the last few years this is getting worse

Other than this walking issue I’ve had fatigue daily for years and some urinary issues … oh and I can’t string a sentence together , it’s like I go blank mid conversation and can’t think of words ( this has got so much worse in the last year or so)

I had complete paralysis head to toe when I was around 20 years old ( which lasted about 2/3 days ) this seemed to kick off the walking /balance issue for me … before this I was fine and remember walking without having to think … after this is when everything began. Stupidly I never went to the doctors after that episode of going numb all over and not been able to move for a couple of days . And I’ve never put the link between the two until recently

My question is …Does this sound like it could be MS? Or has anyone had anything like this? A previous attack before like this and then lingering problems?

Anyway this brings me to three weeks ago I had a numb right leg/pins & needles , squeezing feeling. then woke up the next morning with an inability to move that foot at all ( I later found out it’s called drop foot) I’ve been having to swing my leg around to walk and barely able to walk ( this is the reason I went to my GP )

Foot drop is starting to recover now… so if I had MS would this symptom stay? Or can symptoms disappear? Usually how long would foot drop take to go away in this case?

I still have difficulty moving it but I is improving and the only reason I made a connection between this and MS is because a doctor mentioned it after hearing my history and examination ( they said I have motor and sensory issues)

I have been referred for urgent neurology but I’ve been told it can be months :weary: now I’m just worried sick

I’ve also began today to get the prickly/numb feeling that I usually have in my legs and sometimes hands … in my FACE … lower chin on one side only . This is also on my right side . Do I need to let me GP now about this or just hang on until the referal arrives?

Also Does anyone recommend been seen private?
And do my symptoms match up with possible MS?

:laughing: sorry I’ve gone on and one there!!

Thanks so much for reading :slightly_smiling_face:

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First of all, just breathe. Instead of panicking, remind yourself that you’ve been dealing with these things for 10 years now. The only difference is that someone is paying attention now and you’re starting to work towards a diagnosis.

Yes, your symptoms could very well be MS. In all honesty, they could also be something else, but that’s why you’re going to see a neurologist. If you’re dealing with the NHS, that could take a while.

MS is different for everyone, so sometimes you’ll have problems that stick around and sometimes there will just be isolated incidents that come and go and may never happen again. The only consistency is that there’s little rhyme or reason to how it affects us.

2 Likes
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Hi
As NorasMom said, stop and take a breath… I know it’s overwhelming when you have multiple symptoms coming at you all at once.

It is incredibly frustrating having to wait for a Neuro appointment, especially with everything being delayed due to covid. However, there are some things you can do to be proactive in the meantime.

Keep a symptom diary to take with you to the Neuro appointment when it comes round. (Just bullet points not massive paragraphs because it likely won’t all be read). Type of symptom, how long it lasted, how it affected you.

Do keep your GP informed of any new symptoms you experience, he might not be able to do anything about it (apart maybe from prescribe something to help with pain etc) but at least it will go on your notes.

Be prepared to badger re your appointment if necessary. Sometimes those who shout loudest get taken notice of (if only to get you off their backs!), sad but true.

Good luck with everything.
Willowtree

4

Hello

The trouble is that so often we ignore things for years, then decide to look into our health problems and end up having a long wait for an appointment. That must be driving you mad. As if you’ve not waited long enough!

But due to Covid, appointments are taking much longer. And there is probably no short cut, even seeing a private neurologist won’t get you very much further. The tests you might need cost a lot and even then, drugs for MS (assuming you were diagnosed) cost thousands more. So you’d end up waiting for an NHS appointment anyway.

That’s the bad news. The good news is of course that the chances are that you actually don’t have MS. Most people who suspect they might have actually don’t. (This forum is dotted with posts much like yours.) There are many many disorders that have some resemblance to MS but are not.

What did your GP say? Did s/he do a basic neurological examination? I know you’ve said you were referred for an ‘urgent’ neurology appointment, but did the doctor have any idea other than it being something neurological?

Neurological symptoms can come and go, whether it’s MS or something else. But foot drop usually doesn’t. Generally (as far as I’m aware), once the perineal nerve (which goes from the knee to the foot and enables you to pick up your toes on demand), has been sufficiently damaged to cause foot drop, it stays damaged. Certainly, my foot drop began 10 years ago and never improved. At that time, I was clearly in a relapsing remitting phase of MS, so generally other symptoms of relapses recovered at least partially. Foot drop never did. And that was to be expected.

Your other symptoms would be expected to recover even partially, overtime. The speed of your recovery from some events seems a bit fast for MS though (in my amateur opinion). But then, we always say, MS does what it likes, when it likes. So one persons experience may be utterly different to the next.

I suppose what I’m trying to say with all this anecdotal stuff is that it might be neurological damage that’s caused your problems. Or not. If it’s neurological, it might be MS, or not.

There is truly no second guessing it. Try to relax and wait for your neurologist appointment. If you have a significant event, causing you severe pain or inability to walk (or anything else that’s impossible to live with), take yourself to A&E. Or call One Call and talk to them about your symptoms.

Meanwhile, if your bladder issues continue, get your GP to refer you to the Bladder and Bowel Service (you may be able to self refer, try to find the local service and give them a call!). Living with bladder problems, whether it be urgency, frequency, incontinence or any other symptom (spasms even) is miserable and you can deal with that without waiting for your neurology appointment.

Equally, see if your GP can refer you to a physiotherapist. Maybe a neurological physio? They may be able to help with an exercise plan. If your foot drop does return, the physios might be able to help.

So in essence, my advice is not to expect an MS diagnosis when it may not be. There are too many alternative diagnoses. Try to get help with specific symptoms while you’re waiting for the neurologist to see you. And try not to worry too much. Keep talking to us on here. We’ll do our best to help if we can.

Sue

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Thankyou so much for all your reply’s , this has helped me relax until my appointment and answered my questions!! :heart:

Sue … that’s brilliant advice and explanation… I think after what you have said I’m definitely best to wait for the appointment rather than jumping in with private for the reasons you’ve mentioned :+1:

So yes my gp thought a trapped nerve when he saw the foot drop , but then changed his mind and refered me to neurology after knowing it had spread to my arm/hand and he also said his concern was that I’ve had balance issues and other problems for years before.
And the A&e doctor said she suspected MS … I was hoping everything would ease off but unfortunately I haven’t got full feeling in the foot drop foot and it seems to have just stayed this way now ( so not as debilitating but still have to swing the foot around, so not 100%)
I’m sorry to hear about your foot drop sue and that it didn’t improve

I have felt numbness in my right cheek , tingly lately ( but it’s not more pain now ) feels very strange and my lip is dropping

Diagnosis seems to be abit of an issue after reading some threads it’s frustrating but understandable given the current situation :slight_smile: x