Last reply 4 months ago
Not just aches and pains

I’ve had RRMS since 2013. Seen my share of ups, downs and in betweens. Now I’ve been experiencing pain and weakness in both arms. Started out as weakness with an MS flare I had back in December that also effected my speech. Now it’s back with a vengeance! Was on methylprednisolone and it only helped a tiny bit and only for a little bit. Has anyone else ever dealt with similar symptoms! I feel so confused as to why this is happening! Going for 3 day IV prednisone treatment starting Monday. Hoping it helps alleviate this pain! Please chime in if you’ve had similar experience. Thank you for hearing me! Much Respect!

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stumbler
4 months ago

@theresa_leal , I’ve had Steroids a few times, specifically for muscle weakness.

They are normally prescribed to bring a relapse to a swifter conclusion, rather than let it take its course. It is a medium term solution, as Steroids help your body to recover over the following 6-8 weeks.

Steroids can also have adverse effects on your body too, which is why they should be restricted to twice a year.


lisa_morghan
4 months ago

Hi I’m Lisa yes this disease SUCKS!!! I have a Sister that was diagnosed at age 22 and now 64 and is bedridden seriously dont let this disease get the best of you find things that make you happy find a Hobby do something you’ve always always wanted to do…….. I’m so proud of my sister she in a wheelchair had a vision of a place that people could go in read books get a massage get a reading I’m just hoping you can find your Happy place 👍⚘🙏 by the way when my sister got diagnosed they “Doctors ” had no idea what MS was so no medication I’m telling you the Truth please hang in there and find that Happy place 👌💞👀


itsmewithms
4 months ago

My relapses were typically of the leg weakness/balance variety and once a minor once involving speech. I was given the massive sol medrol home infusion in 5 day courses with a taildown pack. I know protocols vary in different countries and I don’t see where you are from, I’m from the US.

The typical routine is that if I have symptoms for more than 24 hours I talk to my Dr/or likely his assistant, and they set me up for an MRI. Within 24 hours I would have an MRI. If they saw active inflammation I would be set up with the steroids.

This last summer when I was having issues I did the typical routine and when they did the MRI they did not see inflammation (they always had in every other time I called in so I thought that was strange) so I did not receive steroids. It resolved, to a certain extent, but still left some residual damage I am just now working through 5 months later.

Within a month I was having some blurry vision in my left eye and was sent in for another MRI and this time they saw involvement of my optic nerve so I had a 3 day course of the Sol Medrol in a home infusion (a nurse sets the line and then daily I can hook the little grenade sized infusion ball to it at home and let it feed in over about an hour). There was a slight improvement afterwards but nothing like in the past where within two days 80% of the issue resolved.

So- I think my Neuro believes that confirms his suspicion that I have moved into SPMS. I went to the Mayo Clinic in Rochester, MN which is about the best in the US and that is their conclusion as well. So…was pulled off Rebif (had been on that for 6 years and Copaxone for 11 yrs before that) and started on Ocrevus. Been holding steady on that with slight/gradual improvements. I’ll take it 😉

I’ve heard of people receiving small doses of steroids and don’t think that is effective..the big dose I get is 1gr a day…in one of these https://infuserveamerica.com/104/elastomeric-pumps/
Some publication I read said that oral also does the trick if it is at that dosage. Just don’t how how that is tolerated by the body…

If the issue was due to active inflammation it helped me immensely and quickly…I think I have just moved beyond that stage now- Good luck!


theresa_leal
4 months ago

@stumbler @lisa_morghan @itsmewithms
Thank you all for responding! I appreciate all of your feedback!


shelley44
4 months ago

Hi @theresa_leal I was diagnosed 18months ago my symptoms where my arms most of time at night I cant even lie on them because all sore get pins and needles then go numb ..they get tired during day ..I started physio 3 weeks ago so I’m hoping it helps ..I would have full body massage couple times a year I find it helps for a bit

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