Hi Lisa,

I don't come around this forum much these days, but I happened to today and saw your posting.

Is there any chance you have an untreated infection going on right now, like your sinuses, a TOOTH, a UTI, etc? It has always been infection that has stirred up these attacks for me, so I must be sure to treat them promptly and fully when I get one.

During my first attack, the "on again/off again" stirring occurred for 18 months after the initial attack, and during the second one, it lasted for 2 years. I did not do steroids myself, but often-times people do, and that may only serve to interrupt the inflammatory process. Instead I opted to ride it out, because it seems our bodies want to go through that one way or another, and I'd rather get it over and done with (even if the relapse is more severe).

So it may be that the steroids calmed things down initially, but the relapse is back to 'finish the job'. Or, it may be the normal fluctuations that seem to happen for many of us for the (up to) 24 months after the initial relapse ... but if that is the case, for me it never got as the initial event. Or, perhaps it is infection ...

Please be sure you have NO infection going on though, especially with things like your teeth (my third attack was due to inflammation in a tooth and I didn't put 2+2 together at the time).

Cherie

Thank you Dejibou for your response. My psychiatrist has put me on pregabalin (Lyrica) to help with my anxiety disorder and I'll be starting CBT soon. My GP says the Lyrica will also help with the myelitis symptoms and calm
down all my over sensitive nerves.

Cherie, thank you so much for taking the time to respond. Ever since this all started last year I have been reading your posts over and over again as they have been so comforting/encouraging for me.

I don't believe I am suffering with any infection at all. I have had UTI's in the past so I know how they feel. My sinuses are fine, as are my teeth. I truly believe this has kicked off because of my severe anxiety disorder. And we're not just talking about the odd panic attack, we're talking serious screaming the house down, scraping the walls type anxiety. My body really has been under a lot of stress. No doctor or neuro will admit that any of this could be stress related though...typical :-)

I spoke with my GP yesterday and he doesn't feel the need to give me any steroids or refer me back to the neuro. He thinks this is an echo of the original flare and it will settle in time. He did offer me an appt with the neuro if i wanted some reassurance, but he didnt think it was urgently necessary, and to be honest I don't want to go back down that road unless I really HAVE to. So as it stands my good doc (and he is a very special man) has told me to do what I can, rest when I have to, only take short walks if I can manage. He wants me to focus on my anxiety disorder and says the physical stuff will take care of itself. Easier said than done when your having to deal with all these sensations/symptoms!!!

Cherie thanks for the info re the on/off again stirring and the fact that this could flare up again again before recovering fully. This does unfortunately almost feel as bad as the original episode but i cant be sure, there are so many different sensations going on! All i know is that i could sleep for scotland!!! The neuro said it could take up to a year and I have also been told by 2 nurses that if I get tired or stressed it could come back. Cherie I don't have your personal email but I really would be so grateful to get my hands on it to keep in touch with you. I'm new to this forum so how do I go about that? I also notice you are from Vancouver. Beautiful city, I have family in Vancouver and I hope to go back there one day.

Thanks so much again, lots of love, Lisa xxx

Cherie, I've just had a lightbulb moment. Before this myelitis first ever flared last year one of my fillings had fallen out of my tooth. It was left untreated for a few weeks until I could see a dentist to have it refilled. It was at that dental appointment when I was sitting in the dental chair that I noticed the strange buzzing sensations in my right foot. This is spooky, I can't believe I've just remembered this! Anyway, this doesn't really explain this latest flare. I'm hoping this is what you said and just another flare to "finish the job". Really looking forward to hearing back from you.

Lisa x

Welcome Lisa, nice to meet you.

Sorry about your rotten symptoms and hope you feel better soon.

Thank you Sally, nice to be welcomed onto the forum

Lisa

Hi Lisalu,

I will PM you with my email address, because I don't pop around here too often, but I read my email every few days, usually.

Infection is bad for some people with MS, and it seems to be especially true for those of us where we are impacted moreso in the spinal cord.

As I mentioned, most people do try steroids, but I opted not to. I was told that although it will knock the inflammation down, with this type of attack it will inevitably come back. That is how I've witnessed it play out for every person I've talked to with this kind of attack too ...

An advantage to using steroids is that they do seem to make the relapse not quite as severe compared to what I went through. However, I have yet to find one person that didn't end up with the same relapse flaring up and being very aggressive again, when they opted for steroids.

In my case, the relapse was very difficult (I know all are, but ... as bad as it gets), but at least it was over and done with. Everyone else did the steroids, and MOST did steroids again when it re-flared. I can understand that because it is very scary, but since the steroids do not change a person's outcome, I'd rather just "suck it up" the first time, even if it is more extreme.

After that initial 6 weeks, and the 6 weeks of initial recovery, I did continue to have ups and downs for 18 months to 2 yrs, and they weren't pleasant. They were nothing like the initial attacks ... though equally as scary because we don't know what's going to happen, and we do know how bad it can get while we are there.

However, all three times nothing was nearly as bad as the first time, once my body went through the main/major inflammatory period.

This thread pretty much describes every step of the way, fortunately (or not ) because Joe was wanting to know everything that he could at the time. I'm glad you find it helpful.

Have you been tested for Devics/NMO?

Cherie

Thank you Cherie once again for your response. I assume I was tested for absolutely everything when I was in hospital. They took bloods, an LP and 2 MRI's and all they could find was the inflammation on my T spine, the 3 white spots on my brain and the O bands in my spinal fluid. I guess I just have to be patient and let this current episode recover but it's oh so hard!!!! Especially when I thought I was over the worst and bam, I'm back to only being able to walk short distances and having to deal with all these symptoms and sensations again. It really tries your patience all this!!!

Thank you again
Lisa x