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Very scared, don't know what is happening to me

Hello all. I am having some very strange symptoms today. Left foot is boiling hot, and right foot is like ice. Has anybody had this happen?

I’m off sick from work. This is the second job that i’ve been off sick from. I fear that I probably wont go back. I can’t remember people’s names. I can’t remember words. I can’t have a conversation, so I end up not speaking.

My right leg is very weak, as is my left hand and arm. I can’t hold a cup of tea in my right hand.

I can’t lift the kettle of my right hand.

I want to change my MS nurse as she is someone I don’t want to see as she’s a very negative person.

I don’t know what to do.

I’ve never been offered any medication.

I haven’t left the house in about two weeks.

Today, my left breast is feeling numb and well, my whole left side has started to feel numb.

I’m also going through the menopause I think. I am aged 50.

I’ve been on the internet today a lot of the day researching Dignitas. I don’t have the guts to go through with it though, so I just don’t know what to do.

I have turned to alcohol. My old friend. I know that I shouldn’t, but when I’m drinking, its the only time I can relax. My brain just seems to be in over drive.

I can’t stop my brain from thinking. I just want to be peaceful and relaxed.

I was diagnosed in 2015. But I think i’ve had MS since 2010 because I had a numb hand, for about three months, with tests that came up with nothing.

I wasn’t told what I had at the beginning. Then a year in, I was told it was relapsing remitting, then last year i was told it was primary progressive. All I know is that my right leg and my right arm just aren’t improving.

So… after this rant and/or explanation as to why i’m posting here… I would like to ask this question?

How do we define the change from Primary progressive to secondary progressive?

Also… I send out love to all of my fellow sufferers… especially those who are young…

The one thought that always pulls me out of my pity party is the the fact that I have had a full and amazing life. I have lived.

Thank you for reading.

Aw Godiva, you sound rather lonely and very unhappy.

I am sorry.

There is no change from Primary Progressive to Secondary Progressive. They seem to follow completely different patterns.

About 85% of people diagnosed with with MS have the relapsing remitting variant. Which means their MS follows a pattern of relapses when new or repeated symptoms affect them for weeks of months, then are followed by a period of no activity, ie remission. This can change after some years to become Secondary Progressive, in this stage, generally people no longer have relapses, damage done to their nervous system just doesn’t improve.

Some people however start out from the beginning with a progressive form of MS. This is known as Primary Progressive. It’s characterised, not by a pattern of relapse and remission but by continued disease activity and progression, some faster than others.

Quite often, people are initially diagnosed, in the absence of any evidence of progression, with relapsing remitting MS. This changes over time as it becomes clear that there is no pattern of relapse and remission, instead there is more of a progressive disease. That’s when their disease is called either Primary Progressive (because there has been no remission ever), or Secondary Progressive, where a relapsing start has changed to a progressive pattern.

If you can manage to change your MS nurse, do. It sounds like you and your nurse just aren’t a good ‘fit’.

I understand both the Dignitas research and the diving into a bottle answer. Both are reactions that I have had over time. I retain the plan that eventually I may well be taking up the Dignitas option (unless the U.K. government eventually manage to pass legislation that allows for assisted suicide). And I know why drinking helps temporarily, so long as it’s not to extremes all the time or causing falls or danger.

One thing you can do of course is to post more on here. We’ll do our best to make you feel less alone than you do right now. What makes me feel some positives from you is that you have had a full and amazing life. That’s brilliant. It’s an absolute sod if you don’t manage to keep your current job, maybe you could talk to your bosses / occupational health about how you could manage to continue working?

I do hope you wake up tomorrow (without a total stinking hangover!) and feel a little bit more positive.

Sue

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Hi hun, your depressed. You should see your GP to be honest, you need to talk to someone. we all get depressed its part of MS.

I was diagnosed with PPMS in 2016 just after my mum died, I never got to tell her what i had wrong with me, and with her death and my PPMS i kind of lost the plot a bit. then in 2017 i lost my husband, and its well 2019 now and i am only just stabilising. Even then i have a few wobbly days.

I got counselling i paid for it myself. Best thing i ever did. It helped me a lot.

You can work which is great. Your just having a glitch you probably are going through menopause too that can cause depression as well. Look up menopause symptoms, and diet as well there are a lot of things out there you can take now to help you.

Your symptoms are quite like mine. I have this and pain oh the pain…ongoing and never ending. My left side is the worse.

BUT not ready for dignitas quite yet. I have a family and they need me besides which not sure i could even fly over there lol not a chance.

Now young lady no more drinking it makes you worse and will make depression worse too.

Go see your GP and be honest and open.

The more you stress the harder it is to get back to work. I mean ok lets look at it logically. You have a hot left foot cold right foot, you forget names. Non of these things are life threatening, annoying yes, but loads of people at 50 going through change feel the same. My daughter is 44 and her memory is worse then mine lol.

If you don’t want to work thats fine, but if you can I would go back i wish i could work i really do, to get out of the house would be a bonus. To sit in the house, with nothing to do but worry about weird stuff and end up with a bottle and google is a dangerous avenue to take.

So my advise to you is GP, talk, stop worrying about your symptoms and try to get back on an even keel again. I think your amazing to even go to work with PPMS. I admire you if you had the strength to go for interviews be chosen for a job then you are strong enough to sort this out.

You just need help right now. BIG HUGE HUGS, from another PPMSer who knows exactly where your coming from. xxxxxxx

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