It doesn't sound like an all-on TM attack this time, but the spinal lesions are still doing something. It may be that this tooth infection has stirred up trouble with them.

Like I said, I ignored that tooth for a very long time, and the symptoms went on (to some degree, even on antibiotics) for as long as the infection did. It was only that I noticed I had more energy and wasn't feeling quite as bad on antibiotics that got me thinking about the tooth being the underlying problem. It was when the tooth was removed that the problems finally started to go away, but it didn't happen over-night either ... it took about 3 weeks, and I was left with some "permanent" damage. It's really only in retrospect that I can say that was the issue, because I have been fine since then (Apr/08).

Every TM attack I've had has started with infection of some sort. The first time it was a virus, the second an untreated UTI, and the third the tooth. The only difference this last time was that I was on LDN, so I think that helped me not get paralyzed, etc. like the other two times.

It's very possible that that lesion "growth" she is seeing now is from the last attack then, right?

One thing this disease teaches many of us is patience. When things finally do settle down for you, and hopefully for a long while, you will realize that you can survive just about anything on your own. In all honesty, even with the most loving and supportive network of friends and family, this disease is extremely lonely. Very few people can relate to what we are going through, and even less want to try.

That's why we have these forums.

Cherie

Hi Cherie,

Actually yesterday I did have more energy, I'll have to see about TODAY, I have neen on the antibiotics now for about 5 or 6 doses. I have been missing my middle of the night one because I sleep right through it because of my sleep med but first thing in the morning I take it...........You could be correct that this is not an all out TM attack again but it is similar without the pain, I get the tooth pulled on Monday, fun time ahead.......hahaha

Yes that is what my Neuro said about the lesion growth, it most likely grew BEFORE I got on the tysabri but the newer symptoms DID start after the ty.......yes I agree that the spine lesions are still doing something, that is obvious to me. I am not on LDN as of yet but I will bring it up to my PCP and we'll see what HE says........

When his tooth went bad could have been a few weeks ago and i never KNEW I should just get them ALL pulled out now to avoid this again........I don't have many left but the few I do have I would like to keep if possible, I'll see what my dentist thinks......

Right now, this morning I don't feel THAT good but who knows what the day will bring....

This numbness really IS driving me up a wall............

Thanks for the info Cherie, it is great to confirm things that i THINK are happening to me, you have taught me and helped me a LOT.....

Joe

In all honesty, Joe (and I think I mentioned this many weeks ago), I haven't heard that they feel Tysabri is specifically useful for spinal lesions. HOWEVER, if it works for controling brain lesion activity (which it seems to for many), then that can be 1/2 the battle anyway because many of us have them too.

How about taking your meds first thing, after lunch, and before bed? Not sure what hours you keep, but as long as you can spread them out to three times a day (every 6 hrs or so), that's what I've always done. I've never woken myself up to take meds, except fever-reducers. Which reminds me, keep an eye on your body temp as even ONE degree can make a difference. (That's how I usually figure out that I have infection, actually).

My dentist knows I have MS, yet he told me that I could hang onto my molar as long as I could put up with the pain. That's probably not a wise thing to say to someone who can tolerate a lot of pain, and who has spent tens of thousands of $ to do whatever I have to in order to hang onto the teeth I have. (BTW, he's the head of the dental association here ... and even he didn't realize the repercussions-sp).

When I went for my physical with my doc, it never occurred to me to tell him about my tooth. It wasn't until I saw my neuro and doc the next time (after getting it pulled) that I brought up that I had hung onto that tooth. It was then that they told me I shouldn't have.

I didn't want to let that tooth go, and I regret it every time I bite down and catch my tongue. I have so many caps and bridges, I've never been without a tooth . . . and I am not adapting well to the change. My spinal lesions like it much better though.

Getting them all pulled is one option, especially if they are not in good shape and you don't have many anyway. The main teeth they tell us to hang onto are the molars (for chewing), but it's possible that's mostly what you've lost already...? Depending on what it will cost to hang onto what you have left, I might decide to get them all pulled too . . . but if it's not too expensive, how about just getting any decay taken care of instead.

Here is a link to a good brochure on relapses from infection:

http://www.mswatch.ca/ContentRoot/Ed...ry/Relapse.pdf

The numbness won't likely let up for some time, but hopefully you won't feel quite so rotten when the tooth is not stirring things up for you so much.

Cherie

Hi Cherie,

I thought about getting ALL the teeth pulled, for NOW I am getting the one pulled and then having the others fixed.....I will keep an eye n the others very closely and if they give me problems I will get rid of them.....

I have worked out a system to get all 4 doses of the antibiotic in me for the day, I do feel a little better now, its hard to tell but I'd have to say yes I do FEEL a LITTLE better but the attack is still making me very numb, and like I said before, no pain but a lot more numbness and l'hermittes but I increased my Neurotnin and it is helping with the lhermittes and tingling (just not the numbness) the pancreas i still giving me just a TINGE of problems, I have an ultrasound on Nov 6th and the surgeon appt on Nov 3rd, I don't know WHY I don't have those appts switched around but I will finally get to MEET this surgeon so I am keeping it this way, then when I get the ultrasound and the gastro doc sees is the cyst got bigger or not then the surgeon can do what he feels a need to do, (drain it or not)........

SO, ehe dentist delayed my tooth being pulled by a day because of an emergency..

My plan...

1. Get the tooth pulled 10/28
2. See the cyst surgeon. 11/3
3. Get ultrasound for cyst. 11/6
4 See my PCP. 11/7

I will be waiting out the antibody test on the Tysabri n the meantime and then after All this plays out I can move forward from there.

I can't worry yet, just taking things one day at a time, one week at a time and suffering through it all, (what more can I do?)

The thing that is getting to me the worse during this waiting period is the numbness that came back to my whole body, mostly UPPER body and arms and hands.

Cherie, you wouldn't believe how much your interaction with me has helped, you tell me things that I would have never THOUGHT about, you CONFIRM things that I HAVE thought about and you WARN me about thngs that are in my horizon.....

Thanks SO much.
I have not been on the boards for a couple days because i have been trying to keep busy to keep my MIND off of all this, I also have a lot of support here and I have been hanging out with those people to help me deal with it all....

How log do you think this numbness will last this time, last time it was at LEAST a month or maybe 2, I forgot already....

Thanks again

Joe

Thanks Cheryl,

MY brain seems to be a bit worse these days with all going on wth me...

The Tysabri protocol seems to be "bended" a bit BUT my neuro said if I have antibodies they will definatly STOP and NOT pre-medicate with benedryl otherwise if I DON'T have antibodies they WILL continue and pre-medicate and watch me closely....

I will need a "Port" at that time because my veins are SO bad even the infusion center said GET THE PORT!

Thanks for your help and interaction Cheryl, it is appreciated!


Joe

I'm glad you are going to hang onto your teeth and keep a close eye on them. Just remember, "inflammation" means "infection", so if your gums ever swell ...

Sounds like you are all lined up for everything that needs to be taken care of. What I didn't see was when you plan to get the port put in, and when the next Tysabri infusion is. Have they not done the antibody test yet? How long do the results take? I'd hope that you wouldn't have to go past your 4 weeks before you get your next Tysabri infusion, as doing so seems to cause some people difficulty (from what I've heard, even the 4th week before the next scheduled infusion can be difficult for some...).

The numbness is annoying, and can make accomplishing some things very difficult. It sounds like this is sensory nerves only though (not motory), so I'm glad about that. As far as how long it takes to heal, I've had two different experiences in this regard. The first two times I went through the 4 - 6 weeks of escalation, then 4 - 6 weeks of healing. Whatever went numb first, tended to heal first, so I guess about 6 weeks for any one body part to recover (no matter how big that area was). In those instances, my feet started first . . . and they were un-numb at about 6 weeks, however the rest of my body numbness had come on during that first 6 weeks . . . so then I waited another 6 weeks for those areas to heal.

It was different though, when the numbness was due to the ongoing infection (ie. not a "real" exacerbation, but psuedo). My recovery might have had something to do with using LDN, or it could be that I kept the disease process somewhat "in check" by using antibiotics most of that year. I had ongoing escalation, and ongoing recovery (all year). . . but once that tooth was gone, most of the numbness let up in about 3 weeks.

Either way, you are about 3 weeks into this now, so chances are the numbness will start to let up 3 weeks after the tooth is removed. That's my best "guess".

Joe, you don't need to thank me. That's what we are here for.

Cherie

Hi Cherie,

The antibody test takes about 2-3 weeks to come back and they took the sample on Oct 21, my neuro will then schedule the "Port"....IF I am going to be on any kind of infusion therapy....

The tooth is coming out Tuesday, I just am not sure any more which part of me was first or last, I THINK it was my hands......I guess I will find out in 3 weeks huh.........LOL

I always WILL thank you Cherie, that is the way I am, very appreciative person.....

Thanks


Joe

Keep us posted on the what the antibody test shows Joe. I hope it all works out for the best.

How'd the tooth extraction go?

Hang in there...

Ugh . . . the tooth today. Maybe you are more used to having teeth pulled, but I was a real baby about having that one pulled in March (even though I've had 4 wisdom teeth pulled at one time previously).

Hope you are feeling ok, Joe, and this is the start of recovery.

Cherie

Thanks Cheryl and Cherie,

The tooth came RIGHT out no problems at all, it hardly even is sore now.......I forgot to tell the dentist about the blood thinners I am taking, I remembered at the last minute, but it did bleed badly for about 3 hours then it calmed down so all is well...

The antibody test still is NOT back yet, I am on the edge with that.........have an appointment with the cyst surgeon on Monday to see what we're going to do about that.

Still all numb from chest to waist, hands also but I can FEEL myself coming out of this......

I am taking things one day, one week at a time......

Thanks for all the support you guys are THE best!!


Joe