Last reply 1 week ago
Relapse dilemmas

My legs don’t want to work. They will for short distances and/or time periods. Which seems to make it hard for people to understand. Which I guess is why after I had to leave work early yesterday my DH asked if I wanted to go to the zoo. He thought walking around the zoo would be “different” than being at work. I told him it would, but not in a good way. It would be more time between sitting down, outdoors where it was 80+ degrees, and farther distance. In short, more difficult in every way.
My neuro ordered lab to make sure this isn’t an infection of some type. And repeat MRIs to look for new lesions. If there aren’t that doesn’t change how I feel, or my treatment. If there are, I suppose they’ll change meds. I’m the meantime, nothing. My neuro doesn’t like steroids, which is what I know would get me back to work fastest.
I’ve been reading about stem cell treatments in Panama since before this flare after a friend loaned me a book. And today I’ve been reading and watching the Terry Wahls website, which I avoided when I was diagnosed for whatever reason. I think the warning at the beginning of her TEDx talk.
Has anyone found a better way to explain to people the ability to walk but not too far? To function, as long as you can take a nap in 3 hours?
Has anyone tried stem cells? Or the Wahls protocol? Or waited on a relapse to end without steroids?
I’m pretty sure my first episode was about 18 years ago, but I was young and pregnant and diagnosed with fibromyalgia despite the fact that my complaint was weakness and not pain. That lasted about 3 months. Other more minor symptoms continued to come and go for years. I was finally diagnosed with MS a year and a half ago during an episode that started like this one but was cut short by high dose steroids before my first appointment with this neurologist. I haven’t felt fully healthy at any point in the past few years, but episodes like this are especially frustrating.
Thanks for listening / reading.
I just want to have energy again. Energy that if I really think about it I haven’t had for a really long time. It’s worse now but I can barely remember anymore when it was good.

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stumbler
1 week ago

Hi @danielle_kelly and welcome.

You have to have MS to understand what the symptoms of MS are like. But, you might find the analogies on this post “useful” :-

https://shift.ms/forums/topic/describing-your-ms-symptoms

Stem Cell therapy is very aggressive and is still in its infancy. Plus the cost can be huge. You do need someone with first-hand experience to relate.

You can pick and choose a diet for MS. There’s quite a few available. However, we are all different, so it could be a case of undertaking your own personal trials. Anecdotally, a diet can make you feel better, although this may be due to the diet just being healthier for you.

Steroids? They can expedite the recovery from a relapse, but it is felt that the recovery outcome will be the same whether steroids are used, or not.

I hope this has answered your main questions.


danielle_kelly
1 week ago

@stumbler Thank you! That post is great. Too much for my family I think, but good for me.
The nurse just called, my labs are normal as I expected they would be. “So this seems to just be a worsening of your chronic symptoms. We’ll need the MRIs to see if there are new lesions.” Seriously, I think putting the word “just” in front of anything someone else is experiencing should be a crime.
I appreciate you taking the time to respond. I agree stem cell therapy is extreme, and different diets appeal to different people. It’s when my symptoms flare and I feel helpless that I try to find the thing that will make this all go away. Most of the time, I think the people that claim they can make it all better are full of it. The truth is probably somewhere in the middle.

I can totally relate to everything you’re saying. I had to leave work early yesterday too, and have worked from home today (with a 2 hour nap in the middle). I can go from barely being able to talk I’m so exhausted, to running round the garden with my kids the next day. I just can never plan for it. I too have been interested in the stem cell treatment as it makes sense to me, and I would take the risks if I thought it would stop this disease progressing once and for all. Steroids do help me recover from a relapse quicker, and during my last relapse the sense of the “fog lifting” was amazing. But it lasted 2 days and then my face swelled up and I rapidly felt rubbish again. So not sure I will bother in future. Don’t think I’ve really helped you here I’m afraid, just talked about myself mainly! 🙂 But sometimes it’s just good to know people are experiencing the same as you.


vixen
1 week ago

Hello @danielle_kelly. MS appears to follow its own rules and there is nothing predictable about this dreadful condition. Everyone experiences it and encounters symptoms differently, so it’s often really hard to find someone with similar experiences. But the good thing is that everyone on Shift will understand how you feel, or how MS can leave you feeling, so you’re not on your own with this. Stay strong, and give yourself lots of care and attention until things start to settle down again for you x


danielle_kelly
1 week ago

@elizabeth_tuner @vixen
Thank you! Idk why I didn’t join one of these groups sooner. It really does help to hear from other people who really get it. I appreciate you taking the time to respond!


dominics
1 week ago

@danielle_kelly ‘Too young to feel this old’ made me grin. Nice turn of phrase.

I think the people who don’t seem to get it are sometimes bullies. They can see how awkward it is to explain.

I am 50 now and have taken the view that if, after I explain – a reasonable thing to do – what the issue is, and they don’t get it then life is too short. I don’t want to go to my grave being frustrated by idiots. I suppose that part of being an idiot is that they are too idiotic to realise it, so I suppose you have to cut them some slack, as a charitable gesture to be the bigger person 🙂

I will reiterate what others have said: MS is incredibly unpredictable. To you, to the medics etc. You have to go with the flow a bit or you’ll drive yourself mad.

Keep on keeping on.


mlgilber1
1 week ago

I don’t like steroids and they never have really helped me much so during this last relapse they did plasmapheresis which worked immediately with no nasty side effects. I was dragging my left leg before I had it done because I couldn’t feel or move it. Not sure if that’s an option.


grandma
1 week ago

I can totally understand you thinking your first episode was 18 years ago, we are after all born with ms and it takes a ‘major trauma’ to your body to ‘set it off’ hence the 60/40 split with women/men cos men don’t menstruate or get pregnant! The lack of energy and the need to rest on a regular basis are quite normal. Kids and grandkids will understand if it is explained quietly that letting mum/grandma have a peaceful lie down they will be able to play/take them to the park/go swimming whatever floats your boat without it seriously affecting their childhood, as a rule they become more understanding and caring because of it. As far as your employers go, try getting them some written information/ leaflets from your local ms society that explain better what is happening to you. Good Luck🤞👂😜


danielle_kelly
1 week ago

@dominics I like your perspective. Thanks!


danielle_kelly
1 week ago

@mlgilber1 Interesting! After my new MRIs, I’ll ask my neuro about that. Basically, from what the nurse there said yesterday we’re in a holding pattern until they have pictures.


danielle_kelly
1 week ago

@grandma Thanks for your support!

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