Last reply 7 months ago
New MS Symptom and handling of M S

I got diagnosed on 14th January 2014 with Releasing Remitting Multiple Sclerosis it turned in 2 highly which resulted in the copaxone not working and there for it required a more aggressive treatment so I got put on lemdrada. I have had numerous hospital admissions with MS problems eg constant flares due to the highly activeness of the disease now have very poor weak limb strength. The symptoms I had are double vision ,weak limbs, urining hedancency , slurred speech, and now I have a 5 symptom Muscle Spasms. I try and take 2 the max every day I do my own physio etc is it worth me doing what I’m doing when realistically the only delaying the I inevitable ? That’s how i feel about it I would welcome some advice only it seem like I’m on my own fighting this and I’m tired now .

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7 months ago

Hi @jeff_williams and welcome.

Hopefully, the Lemtrada treatment will have removed your MS for the time being. It might come back, it might not.

But, whilst it is out of the picture, you do need to keep on doing what you’re doing. This should retain your present capabilities and might even recover some of the residual damage that you have.

It would be good if you could complete your profile (little man, top right), so that we know a little more about you.

7 months ago

@jeff_williams Sorry to hear you are feeling so down and on your own. Nearly all misers feel the same way at times, I now see my ms nurse every 3 months because I need blood and urine tests cos I’m on Tecfidera. Was on Avonex for 23 years and only saw them once a year during this time but you are on a DMT that requires close monitoring so you should see them more regularly and as our good friend @stumbler says, it’s the squeaky wheel that gets the oil. Ask questions, try and get all the help you can. It won’t always work, my ms nurse has been trying to get me some neuro-physiotherapthy for 6nths. Every time I see her she asks if they have been in touch and given me an appointment, when I say no, she raises her eyebrows unbeliviably, e-nails them yet again, in front of me, says I asked for help for this lady 6 mths ago, she has had no response, and quel suprise, she doesn’t get an answer either, but I understand persistence is the key. Anyway, glad you’ve found us, we’re always here for a natter, a rant, cry, celebration, moan, whatever, we don’t judge, even amusing occasionally, but most of all, with ms there is no such thing as a silly question, I’m one of the old codgers, have had the beast for 26 years, am 62 years old, still here, still fighting, so keep your chin up. You are not alone.😍

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