askitzki 28/03/18
Last reply 3 months ago
Symptoms and waiting..

Hey everyone! I was just diagnosed with MS three weeks ago. It sure is a whirlwind. I first had facial numbness and was treated with steroids during a three day hospital stay. My symptoms subsided and now they’re back. Have any of you had any significant decrease in hand and arm strength? What did you do for it? This is driving me nuts. Especially since it’s my dominant hand. I’m scheduled for another MRI to see if there was any change in my brain (where my lesions are) and then we will see if steroids are a good idea for round two. Currently waiting for insurance to give approval of treatment.. I just want to start treatment so I could get some normalcy back. Ahh. Thanks in advance everyone:)

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


edmontonalberta
3 months ago

@askitzki

If you must take steroids – wean yourself off them as soon as reasonable possible. Long term effects are not pretty…


vixen
3 months ago

Hello @askitzi. It’s good that you’re already on a pathway to medication so soon if that’s the route you’ve chosen (not everyone does). Fortunately, diagnosis these days is pretty quick; only twenty years ago one frequently came across people who took more than a decade to get a diagnosis. It’s also good that in the three weeks since your diagnosis, there have been breakthrough news stories about new treatments. Weak arms and leg is quite a common feature for newly diagnosed. It happened to me too. I’ve never gone back to my pre-onset level of strength. But, once I started to recover from my initial relapse, I slowly and surely built up a little exercise a day. It’s important not to overdo it, because there is a temptation to try and prove you can still do things and force things into overload. It’s important to build up muscle memory. If you can, it would be good to see a physiotherapist who can advise you based on your body condition and symptoms. All the best to you x


stumbler
3 months ago

Hi @askitzki and welcome.

You must still be in shock caused by this diagnosis. Your emotions will be understandably all over the place. Whilst you’re caught up in this whirlwind, you just need to sit down and breath. It’s time to take things really easy as you take this diagnosis onboard.

The initial dose of Steroids would still be working in your body, to help you recover. But, you must rest up to allow this recovery to take place. Steroids work over a 6 – 8 week period, so any consideration for another dose is premature and, as suggested above, is not a good idea.

You’re very young and diagnosed early, which should be in your favour. Your Neuro seems very proactive in monitoring you, which is also a good thing. There are now very effective treatments available that are capable of keeping your MS under control, so it’s more than likely that you can enjoy a normal life.


potter
3 months ago

I am in the U.S, when I was diagnosed my insurance had a list of drugs that they would cover. I could choose a treatment from it, this was 11 years ago and there wasn’t much on the list. I could choose from Copaxone and Rebif, I had Rebif shots for 5 years until I had skin rejection. I have been on Tecfidera now for the last 6 years. Do your research, you are going to have to be your own advocate when it comes to your health care. Potter


askitzki
3 months ago

Thank you all for your kind words. My family has been hit by everything we possibly could’ve been hit with in life except of course MS. So this world has been so new to us. We’re still trying to navigate and learn everything we can about this. The treatment we decided on was the Tysabri infusion which we’ll be starting within the next month, with this one my dr felt extremely strongly about and felt with this he’ll be the one in control of this disease. I definitely wasn’t sure if steroids again was a good idea. I guess I just need to listen to my body now and know that I need to give it time to rest. That has been the hardest part of this whole thing is learning how to slow it down and really know when enough is enough, time for bed. Thank you all again for your words! Much appreciated! @potter @stumbler @vixen @edmontonalberta

Post Comment

You must be logged in to reply to this topic.