Last reply 2 days ago
Steroids…Im new and confused.

Hello all,
I name is Heather, and I’m very new to MS. A quick version of my story is I woke up one day in July and couldn’t walk I had numb hands numb feet no strength in my legs just a total mess ended up in the hospital for five days. So that’s where this all starts but here we are 4 1/2 months later and I still don’t have a confirmed diagnosis. I have another appointment on December 16 but in the meantime my neurologist seems to be fairly confident that it’s a MS. He’s basing that off of the onset of my symptoms my initial MRI, I’m waiting for another next week. Just had lumbar puncture done so he’ll review those results with me and I’m waiting on the vision test. In hindsight, I definitely had other symptoms going on for probably close to two years that I just chalked up to stress and anxiety. Things like dizziness being off-balance tingling in my finger tips tingling in my toes so long story short is me ignoring things obviously didn’t make them get any better. Where I’m at right now is while we’re waiting to To confirm diagnosis he had me do a round of IV steroids. I finished the last infusion last Wednesday I really haven’t noticed any change sense. Can anyone tell me if I should expect to see a change anytime soon or not at all I’m just really confused. Thank you in advance for any help

Add categories

Browse categories and add by clicking on them

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


itsmewithms
3 days ago

HI-
I think we can all relate to your confusion, fear and anxiety but none of us can answer your questions about when things will resolve because MS is a very individualistic disease and it’s path and course for one person is different from another. One thing I’ve learned from my years and then reading the stories on this forum (and in other places) is that is you can never learn enough.

If you use the little magnifying glass in the upper left and put in anything you have a question about the past discussions about that topic will pop up. A common one is “Diagnosis”. It seems like everyone has very different initial first symptoms but Optic Neuritis is a common one. That may just because it impacted our sight or caused such pain we couldn’t ignore it. I also had so many little symptoms that I brushed off and explained as pinched nerves from over-doing kick boxing or because a fall from a horse that were very likely early symptoms of MS and were explained (by me or Drs) as due to something else.

I’ll post in a couple of helpful links. Your profile doesn’t say where you are from and diagnosis and treatment varies by country. That is another thing I really became aware of due to this site. So be aware of that when you research- The MS societies of the US and the UK are good sources of information but also some other sites…random Google searches can’t always be relied upon I have found.

You may be able to relate to this Healthline article or the Aaron Boster videos- he has quite an extensive library I have learned a lot from
https://www.healthline.com/health/multiple-sclerosis/tests-diagnose#lumbar-puncture

Aaron Boster’s playlist- there are a few that focus on diagnosis-

I’d definitely try to document when prior symptoms happened, what they were and how long they lasted. Some Drs don’t like to start treatments or take things to seriously if they feel this is a CIS (Isolated Symptom) but if you can demonstrate any kind of a pattern they may take action.

It sounds like they are working through the tests and hopefully you get resolution soon. It’s good you found this forum as well as I have found the users very helpful and supportive. Good luck- search, post and use this site. If you want to address your question or a response to someone else’s question to a specific person just put a “@” and their name so the response also hits their email box – that can be very helpful- like to hit my box use ” @itsmewithms


heather_louise
3 days ago

@itsmewithms THank you. I am in Florida. My doctors haven’t dismissed me it’s just been a long process IMO. I really started noticing the dizziness, anxiety and tingling finger tips and toes last April 2018. But I gradually got worse with balance and vertigo and I kept thinking it was just anxiety. It wasn’t til I woke up this past July and couldn’t walk that realized I could no longer ignore whatever it was. This has been the longest, saddest 4+ months of my life. I just want to get back to some kind of normal. Thanks for your reply. I have gone through some of Dr Bosters stuff and I continue to try to educate myself.


stumbler
3 days ago

@heather_louise , Steroids aren’t an immediate fix. They’ll be working with your body to help you recover over the next 6-8 weeks. But, you need to concentrate on rest and relaxation to help this recovery to happen.

As has already been mentioned, these conditions are specific to the individual so I can’t give any indication of how comprehensive your recovery will be.


itsmewithms
2 days ago

Being in Florida I see a lot of centers that profess to be MS specialists and especially in Jacksonville. Not sure where in Fl you are at but if near Mayo look into them- https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/doctors-departments/ddc-20350278

If you have been cruising his channel you will see that Dr Boster has information on steroids but Stumbler is right…its purpose is to reduce inflammation that could could help you and some see improvements over time but I often saw improvements quite quickly often within 48 hours! I just had a 3 day round of 1gr per day of infused steroids a couple of weeks ago and did not note any immediate improvements but now my sight seems a bit less blurry in my left eye so over time it is probably helping and my balance seems a bit better. It is, again, a personal journey.

If you watch through the videos on Dr Bosters site you will see all the things that are being considered and done with your tests and while 4 months seems like an awful long time they are considering and dismissing a lot of alternatives in your diagnosis and want to make sure it is the right one.
How to diagnose MS https://www.youtube.com/watch?v=0csvVXatlFo

And the newly diagnosed https://www.youtube.com/watch?v=wvQXygHtYzc

The Mayo link I provided above may be a good one to look into if it is accessible to you. I just warn if you go to Mayo to request all of your MRIs on a CD and printouts of any reports and tests as the Mayo I went to in Rochester MN could not just draw down the info electronically even they they could get at the Healthpartners site and that is where they were loaded to. I had to drive back and get the actual discs…once they had the data they were great and their Neuros are top notch.

Good luck! keep on any on this forum as well 😉


heather_louise
2 days ago

@itsmewithms thank you. My neurologist is a little quirky and he wasn’t sure from the original MRI. However he was going to an MS conference that evening and brought pics of my MRI and showed it to 3 of the top Ms specialists in the Tampa Bay Area who all concurred that they would be fairly certain it is MS. I looked up the doctors he spoke with and they are all top notch. This the reason for a second MRI at UDI USF which has a better magnet. Already completed lumbar just waiting on vision test. That was supposed to be 11/20 but their equipment isn’t working so waiting on a reschedule for that. From what I’ve read 4 months isn’t a long time for diagnosis but I’ve never been knocked on my butt and out of commission so it’s been a lifetime to me. In the grand scheme of things I guess I was lucky to get laid off earlier this year with a good severance package that included paid medical insurance for a year. If not for that, o don’t know where I’d be right now.


heather_louise
2 days ago

@stumbler thank you. I’ve been overwhelmed with information at times while trying to research on my own. I try to stick to the most reputable sources to avoid freaking out.


stumbler
2 days ago

@heather_louise , you’re very wise. Google can be our best friend and worst enemy!

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.