Actually Cherie, I am doing a LOT for myself these days, I get bouts that my upperbody does not work and almost goes dead on me but other than that I am in a cog fog and tired a lot but I am doing a lot for us more than a month ago, the thing that worries me is that the lesions on my spine are not going away and probably never will so I fear that i am going to stay this way......will these lesions get better? ty doesn't do much for spinal lesions so how am I going to get better.............How did YOU get better?

Joe

Joe, that was one part I have never understood ~ the damage is in our spine, yet we have so much fatigue and cog fog going on. I have concluded that it is because our bodies have been so taxed/stressed, we've gone on overload or something. I really don't know why that happens though.

The lesions will not go away, you are right about that. I think spinal lesions are fairly permanent, but the inflammation definitely dies down. What we are left with is plaque (like scar tissue) on the nerves.

There are two parts to lesions; inflammation and damage. What we want to do is avoid the flare-up to begin with, so that there is no opportunity for damage. Of course we really don't have a lot of control over that, but I think that those of us with spinal lesions might have some; we really need to avoid infection in our bodies at any time!!

Your inflammation is still healing, and you should get better yet. You seem to be past the "I can not live in my skin" stage, and are transitioning to a new "normal". I can't even begin to predict what that normal will ultimately be, but we are almost always left with some amount of challenges for several months. They say we continue to heal for up to two years.

It was actully the fatigue and cog fog that took me out of the workforce. I was lucky that my employer let me keep trying from home . . . but they were only being kind and humoring me. I was not at all ready to give up on remaining in the workforce, so I am very thankful that they let me make that decision/change in my own time.

That was the second attack though, and the odds were against me. I'd had MS for many years already too . . .

All you can do is try, Joe . . . WHEN you are ready to do that. I did that after the first attack, and it wasn't easy, but I found myself eventually.

I wish I could offer you more assurance, but I've personally gone two ways with this, and there is really no way to predict what will happen with you. All I can say is that there is definitely still plenty of hope.

Cherie

PS. If all else fails, I'd try LDN if I were you. It helped me a lot ...

Hi Cherie,

Every time I read your reply's I say, WOW, I really cannot express how much this is helping me.....THANKS!

I must still have the C-3 lesion that is still active because besides the fatigue, cog fog and numbness, I am still losing use of my arms, it has happened at LEAST 3 times so far and it seems to be that dang C-3 lesion doing it, everything else that is going on in my spine the C-9 and T-1 lesions I thik have died down.......I hope the Ty helps with my brain stuff and I am going to being up the LDN to my neuro and see what she say's about giving it to me...........she DID say that she could not give me steriods because of the pancreatitis, but steriods might not help anyway although when I had them before the 5th day things did seem a bit better and they did stop the pain in my shoulder blade, THAT was the C-3 also, I would love to try them again, but this damn pancreas of mine

Believe me Cherie, I have disability for 26 weeks and if I am NOT better I will NOT go back to work.......

I am REAL curious about that LDN....

Thanks again

Joe

You are probably right about the upper C lesion being the troublesome one, since your arms/hands are affected.

There have been so few of us that I've talked to, but if the attack gets this severe, there are always clear cognitive/fatigue issues. I have learned to manage my problems with LDN, sleep whenever I need it, and reducing stress. I can still be pretty clued up at times, but definitely not at others. It is very hard to find an employer who is empathetic to this issue!

As far as LDN, there is a stickie on this forum for those of us who use it. It's a long read, but good for one of those insomnia nights.

http://neurotalk.psychcentral.com/thread50240.html

Just be sure that your doc knows you are talking about NALTREXONE, NOT Novantrone (a chemo drug). If you decide to approach him, come prepared with some of the info available on that stickie.

Cherie

Hi Joe,
I don't know if you remember me I posted awhile back and then have been kind of silent. I have been sitting back and reading everyone's posts though. This is new to me and will admit feels wierd pouring my heart out on this forum.

You were one of the people who responded to my post "TM & RRMS" and it is greatly appreciated and so I figured that I better start giving back and adding my 2 cents. However, I am in the learning stages of what is going on with my body and so I feel that I do not have a lot of knowledge to offer like so many other well informed posters here doBless them all! I read everyones posts religiously and am trying my hardest to become more informed.

Anyways, I wanted to let you know that I have been thinking about you and I am sorry for all the red tape that you have encountered. The added stress definately is not a good thing for you. I hope that your flare is subsiding and you are feeling better soon.

SS

Hi SS, yes I remember you and appreciate your concerns, my flare is getting better VERY slowly, I still have not gotten a disability check, I expect it any day..............I know now that I must stay on top of that doctors office, I have taken my stress level down now because I am being more proactive with my fight......:-)

Thanks again SS, how are YOU doing anyway?

Joe

Hi Cherie,

I have read that whole thread on LDN, sounds lie something I would definately want to try......

MY employer is NOT a sympathic man, as a matter of fact he is a real JERK, but before this attack hit me and for the past cople years I have managed a 2 million dollar account for hm and then when this hit me all hell broke loose but they are getting by so far. He is banking on me returning soon otherwise he would have fired me already...........Aside from this TM attackI don't know if I can go back there because of my cog issues............A bit more time will tell won't it.......

Thanks Cherie,

Joe

Well, the cog issues might last a L-O-N-G while, but each of us is different. I did come back 100% after 18 mo with the first attack, but then again I had a baby in the meantime. That'll mess up a person's head, even without TM.

The second time, I don't think I would have recovered any more then I did (after 2 yrs), but the LDN helped considerably.

Try to get your hands on that employee benefits information, Joe. Someone on this forum (I think it is this forum?) was fired from her job, which turned out to be a blessing in disguise because she got LTD out of it.

We can't be fired from a job, here in Canada, while on STD or LTD. In fact, they had to keep my job open for 2 yrs after I went on LTD, although they could back-fill it in the meantime. I now get LTD + all my benefits (including life insurance and employer pension contributions), right through to retirement age.

I don't know what I'd do, trying to raise two daughters disabled, with no money to boot!!

Cherie