Possible PPMS at 24

[CallumHurley]

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 can feel spastic muscle contractions in that region, and all of this within such a short period of time. There is also some subtle stiffness in my right hand, and indeed my entire right hand side. As of the time of writing none of these symptoms has improved at all, and I understand that once the symptoms are active they never get better with PPMS. To have multiple systems affected and the bladder most of all from the offset at so young an age, I am to understand that this seems it imply a very 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

[SNOOPY]

Hello CallumHurley and welcome to MSWorld.

It appears you are making assumptions about having MS and having Primary Progressive based on internet searching without even seeing a Dr. yet. Your assumptions are incorrect.

Are you on any medications? If so you may want to research on medication side effects as a possible reason for your symptoms. If you are having vision problems then please see an Ophthalmologist as the eyes are their specialty and a Neurologist would simply refer you to one.

There are no symptoms that are unique to Multiple Sclerosis as many other conditions as well as medications, vitamin/mineral deficiencies and mental health problems can all cause the same type of problems. Testing to rule out the other possible conditions need to be done and you need to have MRIs.

The "type" of MS someone has is based on how the disease behaves and not what symptoms one may have as the symptoms can be seen in any type of MS. The most common type of MS is Relapsing/Remitting. The symptoms you are having and your age has no bearing on the "type" of MS...if you even have MS.

[jeannef1]

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 can feel spastic muscle contractions in that region, and all of this within such a short period of time. There is also some subtle stiffness in my right hand, and indeed my entire right hand side. As of the time of writing none of these symptoms has improved at all, and I understand that once the symptoms are active they never get better with PPMS. To have multiple systems affected and the bladder most of all from the offset at so young an age, I am to understand that this seems it imply a very 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

Dear Callum,
Please stop jumping to such extreme conclusions! I started having all symptoms at once in 1993 and I am exactly the same now as then. I have never taken an MS drug and have only treated symptoms. My granddaughter is 28 and was just diagnosed also. She has had numerous symptoms too, but she isn't panicking because she has seen me and life is not bad. It's just different. I walk with one crutch, but I walk. I go to soccer games and out to dinner. I enjoy family and friends. My life with MS is probably better than many people without MS. Take and enjoy every day you are given! There is something to be grateful for every single day you are here, you just have to notice it. Please talk to your doctor to ease your mind. You are way too young to be worrying this much.

[JerryD]

Callum,
I am glad that you found us and you are researching all of the world of MS. I think that all of the advice from everyone, here, is very good advice. You would be well served to heed these words.
I was diagnosed with PPMS in 2010. I find that my disability increases every day. PPMS doesn't give you a break, ever ! You just have to learn to live with it. It isn't easy !
MS sucks, that's a fact. But, do not despair, there is much in the works for 'progressive' MS. Keep your eyes and mind open. Good luck

[CallumHurley]

Hi there Jeannef1,

Thank for your kind message, if I were to be capable of a life comparable to your own then I would seize it without hesitation. Can I confirm: are you Primary Progressive? And did you start with similar symptoms (sphincter involvement, stiffness in both arms and legs) as I am?

I am asking to try to find out what kind of physical state could await me in the future so that I can decide now how much loss of function I would be willing to endure. You are very inspiring to me and I can't express my gratitude highly enough for your compassion and attention. I'm so sorry about the struggles you have endured.

My very best wishes

Callum

[SNOOPY]

CallumHurley,

Have you been to the Dr. and discussed your symptoms or had any testing?

I was diagnosed at the age of 24 (I have had symptoms of MS since I was a kid). At the time of my diagnosis my symptoms were many:

- bilateral leg weakness
- hand tremors
- fatigue
- buzzing/vibrations from the waist down
- pain
- I had lost quite a bit of my mobility
- lhermittes
- pins and needles

What I was having was an exacerbation (relapse, attack, flare-up) of MS. This continued during the 3 months of diagnostic testing and another 6 weeks after having steroids. It took me a year of hard work on my part to regain my mobility.

My diagnosis...relapsing/remitting.

My daughter's friend was diagnosed with MS a year ago at the age of 24. His diagnosis...relapsing/remitting.

If you are concerned you have MS then I would suggest you have testing done.

[Boymom123]

Please Don't Be Dr. Google.

Callum,

I completely sense your fear and it is very understandable. However, you have to stop trying to plan the outcome of your life based on symptoms you have Googled. You have absolutely no way of knowing anything right now.

Have you been to a neurologist yet? If not, I highly recommend that you do so. They will be able to assess your neurological state, and conduct a number of tests to find out what you might be dealing with. There were literally 20 different blood tests my doctor did to determine what might be wrong. Then I went through an MRI to look at my brain and spine and see what is happening.

Please do not panic yet. You have no way of knowing that you might have MS - let alone PPMS. Please begin by seeing a doctor to help you discover what is going on, if you do indeed have MS, and if you are just having a flare or if this is something more.

Best

[emwojcik]

PPMS diagnosis

Hi Callum,
Everyone here is right to say to check with a doctor, not the internet. That said, your symptoms sound an awful lot like mine, and I was diagnosed with PPMS three years ago (symptoms like you described began about two years before that).

So yeah, you might have it. And it really sucks. BUT. I'm still completely mobile--in that camp where, if I didn't tell you, you wouldn't know I have it. The nice thing about PPMS is you don't have to worry about losing a week or month of your life to an attack--the symptoms come on gradually, and you can adapt to them. Small comfort, I know, but this is a disease of small comforts.

Here's the thing: PPMS is different for everyone, and it doesn't (yet) respond to any of the really major drugs available. Which means you have to take control now. Right now, if you're where I was, you're getting weaker because of the nerve damage, and that physical weakness is going to make it harder to manage any looming disability. Because here's the thing--you could very well live a whole lot longer (and likely will), but the quality of that living is variable.

Start exercising now, if you're not: At least 30 minutes of aerobic every single day, and do some weights, too, ESPECIALLY on that weaker right side. Strap yourself onto a machine if you have to--anything to make those muscles work even if the nerves aren't cooperating. It will help your gait, it will lessen the effects of the bladder issues, and the worst thing that will happen is you'll get hot, which means you'll need to take a cold shower after. And if you DON'T have PPMS, you'll be in great shape!

Stop smoking, if you do, and start getting some decent sleep. Some of this stuff you can't help--the nerve damage, the fatigue--but some of it you can fight back against, or mediate the effects of. Those of us with PPMS are still on the fringe of the medical breakthroughs, and we have to take care of ourselves. Take vitamins, do acupuncture if you're into that sort of thing, see a physical therapist to work on what can be fixed.

By the time I was diagnosed, I couldn't go an hour without needing a bathroom, and I could barely walk 1/4 mile (and I used to be a runner!). Since getting serious about exercise, the bladder stuff has really calmed down, and I can walk a mile or more without getting weak. My MRIs have shown no progression for the past three years. PPMS doesn't have to mean immediate disability and death--it just means you have to take care of yourself in a way that is totally unnatural to a 24-year old. But you can do it.

Anyway, I hope you get good news and this is some weird fluke. But if it's not, don't panic. You'l be OK, and probably better than OK. Good luck.

[Mimi12]

Hey, just wondering how you arw doing today? Didn't came across a lot of young people with PPMS yet and would be interested in the outcome of your situation, as I am in an very similar situation.

[Leenyi]

Hi Mimi
I don't have PPMS but my cousin was diagnosed with it 10 yrs ago. At the time of her diagnosis my cousin was having major issues with her vision and coordination.
The last time I saw her she was doing much better. Her vision had improved a lot and she was still walking.
The funny thing is I have RRMS and I think she looks better than me!
Just wanted to let you know that people with PPMS can still have fairly normal lives.
Best Wishes
Eileen