Hi Cherie,

My STD is 60% or 65% of my pay, I don't know if I have LTD through work, that would come from SSDI, I am still messed up and feel like I could NOT go back to work even a litle bit, I see my neuro Sept 15th to finalize my Tysabri treatment and I hope to get started on it soon after that.

I am also going to talk about the untreated infection I might have had that caused this......that was a new one for me, I didn't know that one.....

I am still as messed up as I was last week, I was hoping to be a BIT better but I am not........i am loking forward to feeling better after the Tysabri, its a possibility that I MAY have more energy..........as of right NOW I have none.......

Thanks again Cherie

Joe

Hi Joe,

Sorry to hear you are not feeling better this week.

Every spinal lesion attack for me has started with some kind of infection. The first TM attack was a virus (with a BAD fever), the second was an untreated bladder -> kidney infection, and the third stir up was due to an untreated tooth infection. That particular infection lead me into a series of many infections, including bronchitis, bacterial, bladder . . . until finally I had the tooth pulled.

I imagine spinal lesions can act up for no particular reason too . . . that is just my experience.

If you have a copy of your employee booklet for your benefits, you should look up LTD benefits. Most any company that has STD coverage, is likely to have LTD as well (at least here in Canada).

I don't know much about SSI, but you might want to start a thread about that. I think I recall that there is 5 month period without benefits, and it can take several attempts and legal help to complete the process.

Well, some weeks we make good progress, and other weeks we make none. You are on week 8 now, so you should continue to make substantial improvement over the next 2- 4 weeks (that will be 10 - 12 weeks, all up). It really is amazing how much difference there can be in that short period.

Ultimately though Joe, there may be some permanent damage, including fatigue, bladder/bowels, numbness, burning, or whatever. We are not necessarily stuck with that forever though, as we continue to heal even more for up to two years.

I know you must be getting tired of this, but has there been some improvement overall, since the "worst" period?

Cherie

Hi Cherie,

Well, the WORST of this was when I had the Pancreatitus, I have to say that since THEN I have improved 100%, my attack though seems to have leveled out, I HAVE been feeling better than in the beginning, my right hand didn't work at all but NOW it does, I had pain in my shoulder blade but NOW it has moved to my wrist but it is not constant, I HAD been numb from my chest down to my feet but NOW it has gone away and I have feeling again with only residual numbness there. I can actually FEEL the lesion on my C-3, when I bow my head I have buzzing in my arms. My right arm and hand is weak still also. This has all been the same all week with nothing changing, I hope this is all not the way it is going to stay but I know it is not because I know the lesions are still there and when they go away i assume so will these symptoms. That is the reason I want to start the TY soon to hopefully shrink the lesions, I will also bring up some Solumedrol to my neuro on the 15th. I know I am getting better but the improvements are small now and I AM getting frustrated with this all Cherie.......

I will be patient, I had a bad depressing day yesterday but I will bounce back I am sure.

Thanks again Cherie, yu are truly a Godsend....:-)

Joe

Funny how you said "100%" better, since you are probably still a long way from normal. BUT, I get what you are saying because you could live with this result (begrudgingly), and THAT (July/early Aug) was 100% unbearable.

I had some very down periods at that time too, Joe, and you are right that you will bounce back. When coping with your body is all you can manage, everything else that goes on in life just compounds incredibly.

That buzzing is L'hirmettes. I had that for many months after the first attack, but it did go away eventually. I have had it permanently since 2003, but it is very slight compared to what I have experienced DURING the attacks.

Again, steroids are not known to help spinal lesions . . . but if it makes you feel like you are doing "something", then so be it.

As far as Tysabri, I have read on other forums that those with mostly spinal lesion activity do not seem to get the same benefit as those with mostly brain lesion activity. That's just anecdotal, of course, because to the best of my knowledge they have not scientifically tested Tysabri on the various segments (spinal vs. brain). If it is true though, the good news is that Tysabri might be even more effective for brain lesions (then what is "advertised"), because the spinal lesion patients from the trials would have dragged down the overall stats.

I assume you are well informed of the risks for PML and other opportunistic infections with Tysabri, as well as melonoma, rebound effect, liver concerns, etc.? Those risks are low, but should be weighed up.

Some people claim Tysabri has helped their Quality of Life, through improved symptoms . . . not to mention reduced # of relapses, and reduced disability progression. Like all the meds we try, it seems to work very well for some of us, and not at all for others. I hope it is your ticket.

Cherie

Hi Cherie,

I didn't know about TY not doing anything for spinal lesions but I am getting scared now AGAIN........

Yesterday I was at the hospital getting an MRI and for about 5 minutes I lost the use of my upper body, my arms just would not work, it was a weird thing but then as fast as things stopped, it all came back but very WEAKLY, my arms DID work but were so weak I was shaking just holding them up........I went had my MRI and then everything went back to the way I have been with just weakness and numbness, it was scary, I was just about paralyzed from the waist UP...........SO things are still screwed up.......I am thinking that I am never going to get back to normal, or is THIS my new normal??

Joe

No Joe, not that Tysabri doesn't have the potential to have ANY positive affect . . . it just may be very limited when it comes to the spinal cord.

The goal of Tysabri and the CRABs (DMD's for RRMS) is to reduce new and transient inflammation, ie. "enhanced lesions". If this med helps with reducing inflammation (transient lesions), then theoretically there will be less immediate damage, and there should be less T2/T1 (longer term) lesions that will form . . .

However, TM attacks are rare and very seldom occur again. People get some spinal lesion "activity", but it is usually much, much less severe then what we've experienced. So . . . concern over this level of future "active inflammation" really isn't so much of an issue anyway.

What those of us who've experienced this level of spinal lesion activity are left with collateral "damage" from the one attack we've had. There is nothing that Tysabri can do for that as it can not repair the myelin/axons that were damaged in our spine. At best, all that Tysabri can to do is potentially reduce further serious attacks of the spine . . . which as I said are very rare anyway.

(As I said before though, Tysabri may prove very helpful for the brain lesions though . . . .)

I've experienced that too, Joe. In fact I experienced a LOT of that with MOST of my lower body, with my first attack.

You are still healing, and your body will continue to have "short-circuits" while it looks for new routes ...

Cherie

Hi Cherie,

It is just that this past week things seem to be going bad with everything, financially also because of my neuro filing that paperwork too late. That is adding to things too. When i was first dignosed with MS i did research and even everyone on the boards always said spinal lesions were the debilitating ones, I was scared of them and glad that I didn't have them, but NOW my bigget fear has come onto ME.......

You have been one to keep me going through this, I am still very frightened of my outcome because of the way things have gone these past couple weeks, I hope that I can get on the Ty soon so that as my nerves find new routes the NEW routes do not collapse, know what I mean?

Thanks again Cherie

Joe

It just seems to go on and on, doesn’t it?

The spinal lesion/TM attacks, like this one, are gross. I still say they should put us out for that first 6 weeks. Even though it is still darn hard after that, at least we’d be well-rested up for the recovery phase.

Stress, especially financial, is much harder to cope with when our bodies are messed. I never even knew what stress felt like before my second TM attack . . . the closest I’d ever got to that feeling before was “excitement”.

I'm glad I was here to guide you too, Joe. Trust me, everyone who’s experienced this as been just as freaked or more than you. I wonder if I was lucky that no one could tell me what was going to happen the first time, cause I don’t know if I would have had the strength when I knew how long it was going to take. The second time WAS much harder than the first, cause I knew what I was in for.

Here’s to hoping we’ve paid our dues, and everyone else’s that we care about.

Cherie

Hi Cherie,

For the first month I was in and out of the hospital with the pancreatitus, now it has been going on the 2nd month of this and I am not in the hospital so I am doing everything for myself and some of the time I am OK and mostly the rest of the time I am all messed up.....Actually I don't think that I have gotten MUCH better at all because the first month I was not doing anything for myself so MAYBE I was just the same as now, I DO remember being more numb in my upper body than I am now and my right hand works better then before BUT I still am messed up and still don't feel well enough to go back to work even part time. I see my neuro on the 15th so I will see what she says. I am worried about my job at this point, I thought I would at least be better enough to ease back into work by now.........

This DOES seem to go on and on, well it doesn't SEEM like it. Things really DO go on and on and on....

SO Cherie, do we get any kind of award for going through this?..........LOL

Thanks again, I know you guys in Canada don't celebrate "Labor Day" do you?

We all get 3 day weekends because Monday is Labor day, personally I have been on a weekend for 2 MONTHS anyway.......

Hasn't been any fun though as you know........

Joe

But Joe, you were 100% dependant a month ago, and now you ARE doing some small things for yourself, right? Anything we do during this period is exhausting. I remember when even breathing was WAY too much effort, and fixin' a meal was just not going to happen. We ordered in a lot back then.

You know, when allow myself to think back at what I went through, I know it went on much. much longer then the initial 3 months (15 months longer, each time), but it was that first three months that was killer. The first 6 weeks was the hardest, the next 6 weeks was somewhat better. It doesn't become a distant memory EVER, unfortunately.

You can't rush this, and no amount of stressing will change that. Just take each day as it comes, and try to keep the faith that things will get better eventually. I know, easier said then done.

Cherie