Probable PPMS at 24

New diagnosis and before diagnosis
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Hello there all,

My name is Callum Hurley, and I’m a 24 year old make who began having neurological problems about a month ago, and now seems to be developing Primary Progressive MS.

I am horribly scared and have read so many stories of people ending up incapable of moving any part of their body and becoming completely disabled. I am so very sorry for the suffering that MS has caused to anyone reading this, it is so unfair. I know nothing anyone can say will ever make a true difference but I wish there was anything I could do to eliminate it.

I have yet to see a neurologist to confirm nor have any MRIs performed. About a month ago I started having subtle balance and walking issues in my right leg, giving me an unusual gait, which I read is the classic onset of PPMS. I also developed a lot of twitches and what might be optic neuritis in my right eye (but no vision loss). I subsequently developed urinary issues also, and all of this within such a short period of time. As of the time of writing none of these symptoms has improved at all. I am to understand that this seems it imply a versions aggressive and poor prognosis?

Previously I’ve had numerous inflammatory style health problems (Rosacea, Psoriasis, Sinusitis) but have always tested negative for Lupus.

Please help, am I wrong to assume that this sounds very much like PPMS? What does this mean now, especially with my being so young? I have had a very good life thus far and have enjoyed my time immensely but I now find the concept of living in horrific disability to be keeping me awake every single night. I have deeply considered euthanasia before I lose myself to the disease, is this reasonable? How much time might I have? Could this be another less serious kind of MS as I am so young, it has only been 4 weeks but as most of my symptoms seem spinal in nature PPMS seems most likely. Is the progression of PPMS always so extreme?

I do not wish to live a life of pain and misery, can anybody advise? I am so alone and scared, this is like my very darkest nightmare has come to pass. Could this be anything else? I have completely lost my identity and feel practically as though I am already dead, I can do nothing but lay and worry and cry, I have barely slept or eaten for weeks. I think of all of the things that I still wanted to do in life, of all the places I still have not seen.

I understand and that this is simply the way of nature, with nobody to blame and no reason for it to happen. I have enjoyed my life immeasurably and I regret nothing, it has had great quality if not quantity, but I had hoped to live a little longer if possible. This seems so unbelievably cruel, so unspeakably tragic that I cannot find words for it, the feeling has left me catatonic.

Thank you for reading this, I hope beyond hope that peace and health will find you.

Callum

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Sorry Callum but you seem to be getting way ahead of yourself jumping to conclusions, and you haven’t even had any tests yet?

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Hi Callum, welcome to the board. You need to slow down, you have had no tests or seen a neurologist, you are diagnoising yourself on a couple of symptoms that could be anything. There are over a hundred illness that can present like Ms.

you sound like you are suffering from anxiety, your first port of call should be to your gp, go and tell him exactly how you are feeling. Have you a family member or good friend you can talk to.

regards,

ann x

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Duuuuddddeeee!!!

You’re in a dark place huh? I hope you like the decoration, we’ve all been there. I’m not going to say cheer up, or you’ll be ok. Who knows ? But I would say back away from the ledge, put the sleeping pills away, and cancel the trip to Switzerland. You’ve not seen a neuro yet…??? Just chill ya horses. Have you been diagnosed yet ??? I related to you, as I was your age when I got dx back in 96. AND we got knocked out of the Euros that night as well !!! Rough. Day… Since then. I’ve lost my limbs a coupla time, been through months of depression, and my calf muscles feel like hot pokers are getting pushed into them daily. BUT, I’m a dad to three awesome boys, husband of a gorgeous wife, and hold down a full time job.

Your life is far from over. IF, you go downhill, hang on to the sides and shout Geronimo! You might not. You might carry on regardless, going through the same trivial b.s. ‘normal’ folk do. My neuro said to me when I was dx that you never see the ‘healthy’ ms dudes, as they need moolar for trials etc, so you only see the wheelchair bods. As for you reading shit about people in chairs and stuff, stop doing it !! Hell, we could all get wiped out next month like the dinosaurs, or some crazy plants a bomb in a trash can. You could find the partner of your dreams. You could find a frog in a jiffy bag.

If you’re wobbling, come on here and vent. (like you did). There are some really helpful bods on here, most bods have gone through the mill, and then there are some stoopids like me, that will say shit for a cheap gag.

This is not the end. Just the end of the beginning. A different chapter, if you like.

Take care of yourself,

Andy

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Completely agree with Mrbobowen.

Over 100 diseases or conditions can present with similar symptoms to MS, and it’s (usually) a very challenging diagnosis - even for the experts.

With only a few weeks of symptoms, no MRI, and no neuro appointment yet, it is far too early to assume you have MS at all - let alone self-diagnose with the exact type.

In fact, it’s always too early to assume you have MS - you don’t have it unless or until you’re told to your face!

It is extremely rare for anybody to die of MS these days, so even if (worst case) your fears turn out to be right, it’s ludicrous to be asking: “How long have you got?”

Most people with MS have a normal or near normal lifespan, so you have the same life expectancy as any 24-year - unless you are so obsessed with your (imagined) imminent demise that you forget what you are doing, and step put in front of a bus!

Please, STOP Googling, and and stop dwelling on your “inevitable” (as you see it) “horrific disability” and early death. Nobody who is in the least qualified to say has even confirmed you are ill yet!

Take one step at a time (no pun intended).

Tina

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Hi Callum,

The first thing you must do is to accept.
Accept that you may have MS
Accept that life will be different from now on.
Accept that your progression will probably not be like anyone else’s.

There are no rules!

What you can do is to start thinking of what you can still do - right now - and then start planning on how to do what you want to do. Dwelling on what you cannot do will not get you anywhere.

I can bore you stiff with all the places I am never going to see, those places I shall never see again, and all the places that I have seen. Will that make any difference to either of us? No.

Do what you can, while you still can. It might be tomorrow, or next year, or next decade, that you think “I wish I had gone to XXXX while I still could”. What your body can do may be the constraint, but the real limit on you is what is between your ears.

You can always come here and have a rant - most of us have - but do not, please, confuse the rant with a restriction on yourself. Just remember that there will always be somebody who has “been there, done that”, and can totally empathise with your position. And, if there is an MS Therapy Centre near you, start to go there and talk to some of the other MSers.

Geoff

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Hi there Callum, and welcome

Like the other posters here, I think you’re racing ahead much too fast - you’re furiously catastrophising before you’ve even seen a neurologist, or had a single test. SLOW DOWN! and stop reading stories in the press, they’re not always accurate you know - some journalist like to sensationalise.

My story goes back over 30 years, but is too long to tell, I’ll just say - light, dark, denial, getting on with things, bumpy, smooth, bumpy again, diagnosis, acceptance, and now getting old. I’m still walking, have never been in a wheelchair, and still do most things, just not always as well as I used to, and I sleep a lot. It’s not as catastrophic as you think, and you may not even have MS, it could be one of many things - and treatable.

There’s an MS help line you can ring at the top of this page, and don’t forget the Samaritans - day and night, they’re always there, waiting by the 'phone. Also, have you told your GP how you feel? You could have a chat with him or her whilst you’re waiting to see the neuro.

Be kind to yourself,

Ben

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To be honest, Geoff, I think even most of that is premature.

Despite the misleading thread title, Callum has not been given a diagnosis of probable PPMS, or even possible PPMS. In fact, only had symptoms for about four weeks, not yet seen a neurologist, and never had an MRI.

So I think the last thing he should be doing is “accepting” a diagnosis nobody (except him) has made, or even suggested, “accepting” his life will deteriorate, and getting himself to a therapy centre for a disease nobody claims he has!

Basically, he’s got himself diagnosed, disabled, dead and buried on the flimsiest of evidence, and without ever seeing a neurologist. Much too soon to be resigning oneself to a life-changing diagnosis, when it might still turn out to be a straightforward vitamin deficiency or a slipped disc!

Yes, accepting and preparing for the worst is all very well, but time enough for that when there’s some actual evidence - and I don’t mean from Google!

Tina

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Thank you to all for their replies.

The thing is that I have done my research and I know that PPMS with sphincter involvement and multiple sites if symtoms from the offset is pretty much the worst case scenario, and is nothing like the milder versions of MS. I have nothing but admiration but all of those who have lived and thrived despite MS, the stories I have read are truly inspirational. But that doesn’t seem like it will be an option for me if the disease is as severe as indicated.

My doctor has already ruled out most everything else, and is only waiting on the Neurologist to finish that process, so I wanted to know what to expect. I don’t want to sit around waiting for the worst to happen, whilst suffering greatly before an inevitable complete paralysis. I have had a great life and I would want to end it on a much brighter note and on my own terms. It’s not that I’m suicidal, if there’s even the slightest chance that I might live bareably then I would leap upon that, but what I am asking is if that is at all plausible?

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May I also say once more how much I appreciate your speaking with me in this manner and how much I admire those who have forged lives for themselves with the terrible passenger that is MS. I have cried a lot these past few days reading through them all.

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Callum,

With respect, you don’t seem to have listened to anything anyone has said. You are making absolutely massive assumptions, so far unsupported by fact. The chances you have MS are small. The chances of it being PPMS are smaller still (only about 15% of diagnosed people have PPMS, and most of those are over the age of 40). The chances of dying of either kind are small - it’s not a terminal illness. Most people will die with it, not of it.

As others have suggested, please go to your GP and explain how you are feeling. They may be able to (a) give you some much needed perspective into the disease, and what are the realistic odds you have PPMS, or that you will die of it, and (b) give you something (drugs, counselling, or both) to help you deal with your stress over it.

You appear to think you are only going to the neurologist to “rubber stamp” something that, in your opinion, is a done deal. That is very far from the truth. The first visit to the neurologist is the start of what is typically a very long and complex investigation, and hundreds of other things have to be ruled out (things I’m sure your doctor hasn’t even looked at, and doesn’t have the means to).

The first visit to a neurologist is not to “rubber stamp” what you have found on Google, but to start proper investigations - from scratch - into the numerous possibilities.

Even if MRI evidence “suggestive” of MS was found, it usually still wouldn’t be enough to diagnose (because some people have a single MS-like attack but never have another), and certainly wouldn’t be enough to conclude PPMS, rather than RRMS, at this early stage.

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Forgive the confusion, I believe it to be PPMS based upon the onset symptoms: a slight limp in one leg and urinary troubles, along with mild optic neuritis and numbness in various locations in my upper body. My doctor agrees that these are the typical first presentation of PPMS. I have had a couple of brief (<24hrs) episodes of foot drop last year also but with no other symptoms.

I say these things only as my doctor and I have worked to eliminate everything else that could be an obvious possibility, with blood tests and the like, and in the understanding that presenting with these symptoms of MS at onset (if that was what it turned out to be) in a Primary Progressive-esc manner indicates a very poor prognosis.

I would so like to imagine that anything else could be the cause but it just seems so clear and typical as a case of PPMS. And if that is the case then it would be expected to be very aggressive based upon my initial symptoms. Am I wrong in this regard? Has anyone ever presented with such symptoms and instead followed a mild disease path, or turned out regardless to have RRMS? Do primary progressives with these symptoms always become fully disabled and in what kind of timeframe?

I wanted to hear the (frank) facts from those who know better than anyone - the patients. I am very scared of this disease, much more so than death in fact, that I have decided after long soul-searching that I would choose euthanasia in the face of a hopeless scenario, I want to establish if this is one of those. It is correct that I am highly anxious, I cannot function at all, and that is because I am laying and thinking only of my options and probable future.

Does this sound as though it might be anything else?

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Callum, your convictions are clearly proof against anything that those if us with MS have to say to you. So there’s no point me adding my voice to the sensible chorus of people who have already advised against taking your fences until you come to them. But never mind: here I am, adding it anyway.

By the way, ‘research’ is too polite a word, I think, for the over-heated panic-stricken scrabbling around on the internet that people anxious about their health do to scare themselves stiff. That isn’t a criticism - I’ve done it too, believe you me. But it doesn’t do anyone much good. Dr Google is a lousy diagnostician, and scholarly papers that one doesn’t properly understand are even worse - particularly when viewed through the lens of a lively imagination in a heightened state of anxiety.

I hope you find out soon what ails. Anxiety that is spinning free without anything firm to bite on is particularly hard to live with. It would be good for you to know what you were dealing with. But you don’t know yet

Alison

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Thank you all for your advice, whilst my symptoms seem to be pretty clear cut I will take a leap of ignorance and try to live under the assumption that I don’t know anything for sure until I see the neurologist.

I’m not sure however how to do this, my depression since ‘figuring this out’ (or not, as we now agree) is potent and has me almost catatonic. I know I need help of some kind but I don’t know how to go about getting it.

Has as anybody else ever suffered a period of intense depression before that could help?

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Callum, you do not seem to be open to rational argument - and I accept that is because you have got yourself into such a state you cannot shift your focus from what you’re “sure” it is.

But it does make it extremely difficult for the many here who actually have MS to help you, as the impression (as Alison has already mentioned) is there is absolutely nothing we could say that would in any way challenge your conviction.

What do you say to a person who has already made up their mind? If you think your bit of Googling is “proof”, and that nobody who actually has the disease has anything relevant to add, that is your prerogative. Of course you don’t have to believe us - but why ask a bunch of people with MS, but then close your mind to anything we have to say?

And why would a bunch of folks with MS all lie to you that your conclusions may be way off the mark? Sick people, by and large, are not in the business of peddling false hope - we’ve all had far too much reality. So why would we all be saying: “Whoaa, hold on - you might be wrong!”? What’s in it for us?

You need to go to the doctor - not about your “presumed PPMS” (presumed by you, that is, but not the rest of us) - but about how you are dealing - or rather NOT dealing with it.

Acknowledging you need help is the first part - and often the hardest. The next stage is asking - and usually the first port of call would be your doctor.

You need to be scrupulously honest - don’t hold back. If you go in and say something like: “I’m a bit anxious about these neurological investigations”, your doctor won’t understand the extent of it, and will assume it’s completely natural.

So you need to explain clearly to him or her that you have become convinced that inevitable “total paralysis” and early death are your clear and certain future. This unshakeable belief (ahead of any diagnosis) is not normal, and I think some small part of you knows it’s not. But you will only get help if you are totally honest with the doctor about what a firm grip these beliefs have on you. I know you have claimed you are not in imminent danger of harming yourself. But if you are already talking exit scenarios in advance of anything actually being found, you ARE at risk that beliefs will win out over facts, and you will come to harm.

Your doctor needs to be aware of this.

I fear I’m completely wasting my time saying this, but there’s no indication that your initial symptoms are particularly aggressive, so yes, you’re wrong about that. At least, from the picture you’ve painted, you could hardly be described as disabled, could you? You’ve had what you think might be optic neuritis, but without vision loss (hmmm - very odd - ON usually causes vision loss), you’ve had some very subtle gait disturbance, and some waterwork issues (but not enough to be hospitalised or need a catheter or anything, I take it?) No, these are NOT aggressive symptoms.

There is also nothing about the duration of your symptoms that would indicate PPMS. For the record (and I’m not in any way suggesting you have MS at all), an average RRMS relapse lasts five weeks, and some last months and months (the one that led to my diagnosis lasted almost a year). So not being well again after just a month is in no way proof of “unusually aggressive” disease activity, or that it can only be PPMS.

And you are quite mistaken in your belief that everyone with PPMS faces “inevitable” total paralysis. Absolutely nothing about MS (any type) is inevitable. Disease course is hugely variable, and unpredictable at onset. Even with PPMS, the rate and extent of progression is widely variable. Somebody who has very slowly evolving PPMS might be less disabled than someone with RRMS who has a single very severe and unlucky relapse.

“Never” and “Always” are phrases that just don’t really apply to MS. Nothing is certain.

And you cannot know in advance about your ability to cope. Most people can successfully adapt to much more than they think. Studies have been done where healthy people were asked to imagine themselves disabled, and rate their quality of life. When the results were compared with those from people who were actually disabled, the people with real disabilities consistently rated their actual quality of life HIGHER than those who had only tried to imagine it.

In other words, people who have never experienced disability rate it as much more terrible than it is!

Go and see the doctor - explain how distressed you are - not so much by your symptoms, but your conclusions about them.

Let them decide how to help.

Tina

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Thank you Tina, you make very good points that I cannot disagree with. Particularly the part about false hope, which is perhaps what I am most afraid of. I understand the catastrophic nature of my concerns, my symtoms and research made it such that I had been considering the worst case scenario, and I agree that exit strategies must wait until the definitive facts are in place and I will be sure to take to heart your words on that subject.

I will do as you suggest and have a very frank discussion with my GP as soon as I can. I need to do something to make it until the neurological exam else I can’t imagine what state I will be in by that point.

Your advice is very well received, thank you.

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Callum I would suggest you re-read what people above have said and try to chill out.

We’ve all had the experience of actually being told that we do have this condition so can understand your fears. I reckon that is a good reason to pay attention when people are saying you are getting ahead of yourself. You really shouldn’t be thinking about ‘exit strategies’ and hopefully you take heed.

Even if you do get an unwelcome diagnosis - its not the end of the world and life goes on!

Do you have any other health issues? Oh and your writing style is very dramatic!

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That’s kind of you, Callum, but I’m afraid you would likely find us all disappointingly ordinary and with no greater-then-average signs of heroism or moral courage. Humans generally are marvellously resilient creatures, you know. People tend to just deal with whatever comes along. As will you.

Alison

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Speak for yourself Alison, I’m Batman !!! :wink:

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I’m 36 female and all was fine in life them boom ! I kept have this warm sensation running down my left side my hand got wobbly couldn’t hold things then went to er they did mri and said something was very wrong spot found in brain one only. I couldn’t walk properly the next day in hospital I was sent in ambulance from one hospital to a bigger one stayed a week there . Had everything looked at heart chest mri after mri blood work even a spinal . They said after all tests it was still hard to tell but it looked to be ms and it was my first lesion which made it hard to tell . So went home and couldn’t fucking walk at all had walker . Week passed couldn’t hold my head up without vomiting had to go back they gave me meds and vomiting stopped . I thought that was it for me I was scared anxiety was off the roof depressed all that. I stayed that way 3 months . During that time I couldn’t run my mind would want to move my body wouldn’t go with it . I couldn’t write a note on one side it looked like chicken scratch. Three months later it went away I could walk and felt normal I thought it was crazy seemed like nightmare really. Now I have had some headaches now and then and some eye floaters from time to time . Sometimes fell a lil dizzy but only for few mins couple times a week sense then I have been fine basically for two yrs now and nothing major. Here I am I don’t take any meds either cause the neroligist said until I have another flare they don’t want to give me anything .so I’m living doing me .