Your Story?

Hi all,

My name is Yousif and I was diagnosed with ppms last week. As you may imagine, I do not have any friends with a condition like this (I am 24), so I have learnt lots from this forum as well as the helpline here. I was just curious to know, if possible, your story. How/when were you diagnosed? What were your kinds of symptoms? And more importantly, at what rate did these symptoms progress? I apologise if i sound insensitive in those questions, its just that I can research all day and read websites, but I’d just like to talk to real people who are going through this as i am if possible.

So I will start. For me, the major symptom was a tremor which has gotten a lot worse over the last 2 years, so much so that work (and even writing this) has been a struggle. Aside from that I have had like balance and vision problems etc… Finally got to do MRI few weeks ago and received diagnosis last week.

Hi Yousif!

I’m also new to this forum. I’m 57 (although I’m 24 in my head). I was diagnosed with PPMS last October 2019.

My symptoms were mainly stumbling, as if the messages weren’t getting through to my feet, and I fell over a few times. I had what felt like electric pulses going up and down my legs at night.

An MRI scan last March showed the lesions, and a lumbar puncture confirmed PPMS.

Since then I’ve been following the Overcoming MS low fat diet pretty religiously (no meat, no dairy, plenty of fish, no sat fats). You can google it if you’re interested. My pins and needles calmed down and my movement improved. I also increased my exercise.

I had another MRI scan in January 2020 and there were no new lesions and no active inflammation or active demyelination, so happy days.

This week, however, it feels as if my hands are on fire. Really itchy particularly at night. But I’m not sure if that’s to do with all the hot water and hand washing :slight_smile:

There’s lots of helpful stuff around. As a young person you might also find the Shift MS forums useful, although I think PPMS is fairly rare among younger people?

I remember reading a lot, then not wanting to read anything, and it’s only now I’ve ventured onto the forum :slight_smile:

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Hey,

Thank you for your response. Your comment in relation to diet is interesting. I spoke to a dietrician recently and she said that there is no proven research to suggest particular diets have an effect, and therefore just advised me to have D3 and Calcium supplements, but i will certainly research your suggestion! Happy to hear off the positive news after your MRI, and I hope things keep improving!

Hello Yousif.

There’s a lot for you to find out. No-one really knows how it will affect them until it does. I started with nerve issues and stumbling as far back as the mid-eighties. I was diagnosed in 1994. I’ve had a gradual decline and now use a wheelchair full time. But I’m still capable of enjoying life and have great supportive friends. The general summary of symptoms on this site is a good place to start to see how we get affected. There is lots of good positivity and wicked humour on here.

Best wishes.

Thank you for sharing Steve…

Hi, think I`ve answered you on another board… however…

my first symptoms were falling over fresh air…like a lot of folk.

Although I wasnt officialy diagnosed until this year…I spent 22 years seeing a total of 17 neuros…got wrongly diagnosed and spent a few years with the wrong label!

My condition progressed rapidly…was a full time wheelchair user within 3 years or so.

I only manage now because I have a good hubby and care team.

Boudsx

Thanks for your reply. That must of been tough, but I am glad to hear that you are ok now and that you have a good support team.

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Hi Yousif Sorry to hear your diagnosis. It takes a while to get your head around it. I also had the tripping over nothing but I had a lot of pain in my arms and legs too. I fainted a lot, especially after a nice hot bath and I had episodes of incontinence, both urinary and faecal. I can trace some of my symptoms back to the early nineties, but was told all my problems were due to depression, stress and they made me feel like a hypochondriac. I was only taken seriously at the end of 2010 when I physically couldn’t get out of bed. I got diagnosed in 2013 at the age of 43. I’m 50 now and still mobile with a stick, though I’ll get no prizes for stability, speed or looking graceful. As the others have said, we all have symptoms. Some of them stay with us permanently and some come and go with different levels of severity. I still have a good quality of life. I’ll never scuba dive again, but I make reasonably nice cushions and bags. It’s just a case of finding different hobbies or changing how you do things. Good luck Cath

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