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Understanding PPMS

Hello to everyone! I hope you are all doing okay :slight_smile:

I am 24 years old and I have been diagnosed with PPMS 10 months ago. I have severe walking issues, and weakness in my left leg, arm and stiffness in my index finger. First my neurologist asked for an MRI and the results showed lesions in my brain but I was told it was inactive and there were no lesions in my spine. Then I had a lumber puncture and it was positive so the diagnosis was confirmed however ive never had any relapses so PPMS made more sense to my neurologist. 10 months later I recently had another MRI and i was told i have more lesions in my brain but are still inactive and still no lesions in my spine. My symptoms have gone worse and i can hardly walk or use my left arm. I could practically run 2 years ago and im really scared because it is progressing very fast and all these MRI results do not seem to make any sense to me. I have started taking Ocrevus but it is clearly not helping since the progression has not slowed down :frowning: I am mentally very bad and scared because i did not think MS progresses this fast and I’m only 24 :frowning: I don’t understand what they mean by inactive lesions and i don’t know what can help me, i feel really helpless and hopeless :frowning:

Hi there Ezziiy. Drink plenty of fluids & do light exercises when you can. The diagnosis in the first place, will cause you concern. Letting things bog you down, will make things worse. I’m 47 with PPMS & some folks said I’d be dead in 2 years. I was diagnosed 4 years ago & I’m planning where to go on holiday next year. Focus & doing positive things & ignor the idiots. Apple Cider Vinegar capsules with Kelp & vitamin B6 have been working wonders with me. I’ve personally chose to avoid going to the GP’s & take no medication. Foods high in vitamins & living a healthier life have made the best difference. The human body is capable of self healing if you are relaxed & away from stress creators. 24 or 54. You just need to make some changes & don’t worry. The stress is not needed. It’s just avoiding those who radiate the stress. You’ll be okay. I’m on the last day of building my own electric mountain bike. The power assist will be useful when the legs give up, travelling on country paths, getting some fresh air & seeing the world isn’t so bad. You have a great future ahead of you. Go & get it. Yes the PPMS will be there to stay, but it will take hold, if you let it & allow others to make it worse. Take it easy. Terry

Hi as terry said, don’t listen to negative thoughts look after yourself you know your own body best I have had it for 13 years I still go into the pool three times a week so keep yourself fit as possible it will help in dealing with stuff also any questions just ask because one of us will know what you are going through.

Trish

Thank you for all this information and motivation. I think it is my foot drop and the radip development of symptoms that worry and scare me the most :frowning: i will take all of this into consideration

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Your best bet is to get a physio to assess the areas of muscle weakness and suggest some strengthening exercises. The MS Therapy Centres tend to have good ones that understand the condition, and hopefully, there is one locally to you.

Take a look at an FES and see if you think it might help with drop foot.

http://odstockmedical.com/

Try not to worry too much about lesions and concentrate on what you can, and can’t do, instead.

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Hi ezzily the last words my neuro said the day I got the diagnosis was try and get your core strength up and carry on as normal as possible that’s what I have done and there not been to much progression in nearly five years .

I’ve put some foam supports in my shoes & wear compression stockings for extra support. I drag my left leg one day & my right the next day. It confuses me. I should be in a wheelchair, but once I’m in my car. It seems okay. Until my left arm goes & I get some sleep in, once I get home. Mixing with sensible people helps. Avoiding the idiots of the world. Which is easier said than done. You’ll be okay. One day at a time. Just look after yourself.

Are you from the UK. If so Please, Please ask your neuro to refer you to see a Dr Richard Nicolas (Charing Cross Hospital) as if you have a diagnosis of PPMS and are getting new T2 lesions then you would be entitled to get HSCT. This has been proven to help with PPMS especially in the early days which is why it is being done in London now. Unfortuanately not all local neuros know about it. If you join the facebook group “UK HSCT for MS & Autoimmune Diseases”

Good Luck

Moyna x

Hi Monya,

i am from the UK. But they said my lesions are inactive, will i still be eligiable? Also can i see him privately?

Ezgi x

Yes i believe you can see him privately. In PPMS I dont think the lesions need to be active as long as you have New T2 lesions.

[quote=“Moyna”]

Yes i believe you can see him privately. In PPMS I dont think the lesions need to be active as long as you have New T2 lesions.

[/quote] Okay thank you. I will get through to him