Presenting with walking difficulties and urinary issues

New diagnosis and before diagnosis
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Hello there all,

My name is Callum Hurley and I’m only 24 years old, and within the past few months have begun having walking difficulties (due to what feels like stiffness in my right calf and ankle), some similar sensations in my right hand, and urinary issues (accompanied by what feel like spasms in my groin). I’ve had no visual problems at all.

Is it unusual to have this many problems and particularly urinary issues right from the offset? I can still walk fine but feel very unbalanced. Does this sound like Primary progressive MS? Did anybody else present like this and what happened afterwards? Am I going to become inevitably disabled/paralysed?

Callum

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Callum,

I’m trying to stay nice about this, but we (myself and others) have been through all this with you at great length already, but you’re still plugging away with the same old question.

(a) You’ve never seen a neurologist, and haven’t been diagnosed with anything. It’s quite wrong to assume you have MS, let alone PPMS, and it would be quite wrong of anybody here to agree with you, or say that you would “definitely” be paralysed (or definitely not) when we don’t know what you’ve got.

Even if you posted that you had a confirmed diagnosis of PPMS, we still couldn’t tell you what “definitely” will or won’t happen. None of us has psychic powers (that I know of) - it’s just not possible to do that. If we could tell the future, we’d all be lottery winners several times over.

(b) Despite what you seem to think, your presenting symptoms are not ten times more numerous or ten times more severe than anything most people here have gone through at some point. IF you had MS (which is a huge IF), there are no indications you are at the extreme end of the spectrum in terms of severity. I’ve put up with stuff like this for years - many here have put up with a lot worse. Funny how we’re all still around and yacking away on the computer, isn’t it? Must mean we’re not dead…or totally paralysed. Or do you believe everyone here is using eye movements to interact with the computer, Stephen Hawking-style?

A minority might be using voice recognition because of difficulty typing. But most are just “on the computer” - you know - like normal people! Because we ARE normal people, who just happen to have MS.

Please take my advice and go to the doctor about your extreme anxiety. At the moment, it’s having a greater impact on quality of life than any of your actual symptoms, which is an absurd position to be in.

Unless you update us that you have done something constructive, like approach your doctor re the anxiety, I’m afraid this will be my last post on the subject, as I cannot keep debating with someone who is “positive” they’re going to be completely paralysed, and unable to conceive of any less catastrophic outcome.

The hundreds of diagnosed people here who are not “completely paralysed” surely must give you some idea it’s not the norm?

Tina

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Tina,

My sincere apologies, I am still awaiting a doctor’s appointment and am very much catatonically scared and alone. I will refrain from asking further.

May. I just ass that it is not that I believe that my symtoms are unusually severe, I do not wish to undermine the suffering of others, only that the medical literature I have (as you might guess, extensively) read indicates that they indicate a very poor prognosis when presenting at the onset of PPMS, and that it is unusual for it to be as severe so quickly (within 2 months). This is what I was trying to ascertain.

I hope that you will be as healthy as can be, I’m sorry for any upset I might have caused.

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Right Callum. I am going to reply but I am not as nice and gentle as Anitra.

  1. You have not, as yet, been diagnosed with a neurological condition. Let alone MS. Let alone Primary Progressive MS.

  2. You have not had the necessary tests that COULD diagnose MS such as up to date MRI, lumbar puncture, VEP test etc etc

  3. You are NOT a neurologist.

  4. You have not SEEN a neurologist.

  5. You have not “researched” anything - just reading something on the Internet doesn’t amount to research. You have been on the Internet and cherry picked from sites that you have not understood fully or which are downright WRONG! How do you know how to evaluate what you are reading on the Internet? What is your training? What is your experience?

  6. Your GP is not a consultant neurologist and, TBH, I would be surprised if s/he has ever worked on a neurology team or even done a neurology rotation when in training. That is not a criticism of him/her it just acknowledges that being a qualified Doctor does not mean that someone knows everything about all medical conditions.

Furthermore, although MS is not that unusual it is not actually that common. Many GPs will never actually come across a case of MS in their career, let alone actually be able to diagnose it just by looking at someone. Even the most experienced MS specialist in the World would not be able to do that.

  1. What did your GP actually say about your “probable”/“possible” diagnosis? Did s/he simply say - when you mentioned MS - “we have to consider all possibilities” (or similar) which you have heard, in your stressed state, as “yes, you have PPMS, I will just send you to a Neurologist to get my diagnosis rubber stamped”.

I very, very, VERY much doubt that s/he said anything at all that could be taken as a (probable) diagnosis because that would not just be bordering on negligent it would be so negligent that it would mean that they would have booked themselves a one-way ticket to a tribunal in front of the GMC!

  1. Remember, Dr Google is a TERRIBLE doctor and should have been struck off years ago.

So, what I would suggest you do is:

  1. Go and see your GP again for help with your anxiety. Ask him/her to repeat what s/he thought about your symptoms without filtering them through your panic.

  2. Wait to see what the Neurologist says.

I would suggest going with somebody who will actually be a little detatched from the procedure (a partner, family member or sensible friend) as they will be able to remind you about what was actually said.

At the very least, make sure that when you see the Neuro you are copied in to all letters and reports that s/he sends to your GP.

  1. Be prepared for further tests and examinations before any diagnosis of ANYTHING!

Best wishes and let us know how you get on. Just stop putting the neurological cart before the horse and step away from the Internet …

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Callum, you’ve now had many sound and well meaning replies both here and in your other two threads.

In my last post to you I suggested you call either the free MS Helpline, number at the top and bottom of this page, or the Samaritans. You really would benefit from having a good chat with someone about your MS anxieties, you might find it a lot more helpful than you think. Talk it through - out loud -, again and again if necessary. Then, when you’ve unloaded some of the anxiety you might just get a more realistic picture of where you are.

‘Catatonicaly scared and alone’ says to me that you need to talk.

Go on… pick up the 'phone… dial the number. It’s easy, and you’ve nothing to lose except your fears.

Try it,

Go on Callum, please call someone.

Ben

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Poor Callum…hes taken a right old virtual` ear bashing here!

But Callum, your mind is doing what mine did to me ie ran hurdling along, reading more than is good for us and coming up with the scariest scenario!

I have spent what feels like eons, since I first fell into a glass door, busting my lip and bruising my imagination massivley!

Tina gave me the hard word too, in trying to get me to calm down and ask myself a question ie

did I really want to know what was wrong with me, or did I want to keep frightening myself? Dunno if you recall that Tina…I know you meant well, but like Callum is now, I was all over the place!

Anyroad Call, I was wrongly diagnosed wth PPMS for a few years, before being told I never had MS at all, but something that mimics it wonderfully…without any proof via the many teats I underwent.

Whether you`ve got PPMS, HSP (my lovely title), or the Galloping Dogtrots…no-one, not even an fantasticaly qualifed neurologist could predict wat the outcome would be.

And Ive met 17 of em!

luv Pollyxx

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Poor calcium. Take the advice as above. Go see your GP again. To have a diagnosis of MS the NICE clinical guidelines state you must have a brain MRI scan and lumber puncture to determine the diagnosis. Oh and numerous exotic blood samples taken to rule out such things as HIV, hepatitis and a whole host of other diseases that can play havoc with your immune system.

What most people don’t know is Mr google is actually only % 5_10% of the real information out there and not always factual.

I know what worry can do to a young person. I have a son who is a little older than you, and he has a panic imagination at times as well. It can be a worry when your young and think naively its all doom and gloom, don’t put yourself in that situation, stress ain’t worth it. Get the right answers and diagnosis from the professionals, then you will be able to understand your symptoms and what’s causing them better.

Good luck calcium.

Margo

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Auto - correct ?

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Hi

Just thought I’d give you my experience, for what it’s worth!

I am 46 and was diagnosed last August (2014) with Primary Progressive. This was after 2 years of numerous tests which include:

Three MRI’s, lumbar puncture, 2 lots of VEP’s, over 10 blood tests, numerous consultant appointments plus other stuff I’ve most lightly forgot.

I was told that I was quite young to have PPMS and this was initially ruled out early on but then confirmed by MS specialist consultant after 2 years.

My advice to you would be that it is very unlikely at your age to be PPMS but if you are experiencing what you said you need to firstly speak to your GP and get a referral to a neurologist and take it from there. There are so many disorders, diseases and illness that have symptoms similar to MS (let alone psychological) that jumping to the conclusions you are is illogical. I was convinced I wasn’t PPMS because I didn’t want it to be, however, it sounds to me your the opposite!

Mr Wobbly

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hi callum

i understand that you are scared and feel alone.

my two sons are aged 26 and 27 and i wish i could give you a hug.

when you see your GP ask for blood tests to check on your B12 and D3 levels because deficiencies in these can throw up some scary symptoms but are easily corrected.

wait for an appointment with a neurologist but do try to stop jumping to conclusions.

see if there is a course in your area on mindfulness meditation which is a good way of learning to live in the moment, not worrying about what might be in the future.

see your mates, have a good night out and act your age!

carole xx