I put in the quote from the Tysabri page but since you can't cut and paste here with out providing the link, I had to provide the link to where I got the information.

If you go to the link and scroll down, or use the search function with the key word "antibodies" you will find the information I was referring to when you said they were sending off your blood to be testing for antibodies.

Also, in the same part of the medication guide, there is some information about allergic reactions.

Oh, ok, yes I did read all that, I called the neuro today to see what she i going to do with me.....

Thanks for the Info about this Av8, my scrambled brain just got a little mixed up.

:-)
Joe

Hi Cherie,

No the infusion center won't do anything without the docs orders, and Yes basically i am saying that I have all the numbness without the pain, the hand numbness came on about 3 weeks ago and has gotten steadily worse, and when I tilt my head DOWN I get buzzing and can feel it all the way to my finger tips.

Also just about 2 months ago I would have , what I call, attacks when my arms go VERY weak on me, at first it was both arms doing this, then it started that one arm would do it, then the next time the OTHER arm would do it and it would alternate and go frm one to the next, with sometimes BOTH again at the same time. The "attacks" as I call them would last about 10 to 30 minutes each time they happened. I DO have lesions on C-3, C-8 and T-1, the neuro at first thought it was the lesions then she said she was not positive cause the symtoms were esculating and went from one side to the next. They said it was not normal for MS and they suspected a slipping disc, I had a neck only MRI on Friday and then the TY reaction on Monday. I called the neuro today because I need some answers NOW, the upper "trunk" area numbness started again also about 2-3 weeks ago and it is ALL gettin steadily worse, still no pain or if there is it is very MILD ache in my right wrist. The numbness is driving me batty......

Oh and of course I still have the pancreas cyst going on and I see a surgeon on Nov 3rd.............I am getting sick of being bounced around frm one doc to the next with NO results..........NOT to mention both my arms hurt and are black and blue from missed IV's and missed MRI Dye injections...........I am getting sick of all these issues all at once........AND the weather is getting COLD up here and I get seasonal depression also........

i have filed for long term disability and I am not even sure my neuro is supportive with that......I am NOT happy with the way my body, my mind OR my life is being handled right now......

it is hard for me to type with numb fingers and hands and that is why i have not kept you updated, for this I am sorry Cherie.

You have been such good support through all this and I feel I have let you down.......sorry...

Joe

You're welcome...we all get scrambled. I am too these days.

Your doc is fully aware of your (slight) allergic reaction the last time then? Since so many pre-medicate with Benadryl, and you've already had one reaction, I think I'd ask him if it is worthwhile to PRE-medicate...

Sounds like l'hirmittes (zapping while bending your neck), which can happen due to MS lesions, or many spinal injuries.

I don't know what to say about all your new symptoms, Joe. I definitely think it is worthwhile that they investigate the potential disc problem, and your doctor has made a good point about it being unusual for MS to swap sides like that. A pinched/bulging nerve does seem to fit in that regard . . .

If the pain came on (not the toothache type pain that comes from many spinal injuries...) like the neurological pain you had before . . . then I would think this is the lesion flaring up again. "No pain" has me thinking that it's not the MS flaring up.

My hands are "permanently" numb, since my last spinal lesion flare. Heat, positions, stress . . . a lot of things affect "how" numb they are, but they are always numb to some degree. When I have an attack though, they HURT, feel swollen/like encased in cement, some fingers don't work at all (not just numb, but totally uncoordinated, etc.). Are you having any of those symptoms . . . or just numbness?

I think you have a VERY astute doctor, Joe, that she has picked up on what might be subtle differences between "usual" MS spinal lesion symptoms, vs another problem in the spine. I know you have lost your patience for the run-around, but her investigation seems very worthwhile to me.

I get SAD too, but it doesn't hit me till Feb every year. Are you on A/D's . . . or do you get light therapy for your SAD?

I know your frustration with other medical issues at the same time as the MS . . . I am going through the same still. Fortunately I have a very high tolerance to pain, so I have taken a "testing/poking/prodding holiday", until I get then energy to deal with everything again.

If you can live with some of the things going on, just kick back and DO NOTHING about things for a while. It's good for the soul.

What makes you think your neuro isn't overly supportive of LTD? This is a very important factor, so I hope you get him on board!

Cherie

Hi Cherie,

Thanks for the reply,

NOW I am nervous, more than before. My neuro called I do NOT have any discs slipping in my neck BUT the lesion did get bigger, not active but bigger and that is what is causing my issues, she is waiting on blood work to come back and said if I have antibodies I will have to stop the TY, if not I could continue and pre-medicate with Benedryl so all is resting with the antibody test. She said if that comes back positive that we will have to get "creative" in our treatment.......I am just about OUT of options. We might have to try IVIG next.

She did say they received my SSDI paperwork and she is on my side there and they will do what they can to get me on it...

...If I continue on ANY kind of IV treatment I will get the "Port-a-cath" because my arms are ALL hurting and black and blue from IV misses and missed dye injections

I am scared about all of this, I will just HAVE to not worry though and see how it all plays out, probably the best news was that I won't need operated on yet with the disc but the worst news is the lesion is bigger........But very little pain......it is funny how you mention toothache pain, I DO have that and have an appt with my dentist to fix that because some of my teeth DO need work....

As for the cyst, I will wait on that also.........there is a "Plan" for me and my recovery and I refuse to get in a tizzy about all this.........my seasonal depression is controlled right NOW with zanex and that is helping.......But if I COULD just relax and get approved for SSDI, I will take COBRA insurance and let the rest fall into place....

I have STD until Jan 17 and also have insurance until then. After that I am the one that has to be "creatiive"..

Thanks for your help Cherie, how many times have I said THAT.....LOL


Joe

Joe, FIRST AND FOREMOST, get your teeth fixed!!!

Your neuro might not say anything about the importance of this, but I know first-hand how infection can cause our spinal lesions to be a problem.

I had "inflammation" in my tooth for all of 2007, and for whatever reason, did not connect "inflammation" with "infection". I struggled many months with my spinal lesions (never had a MRI, but they were definitely acting up), and I finally noticed the only time I felt ok was when I was on antibiotics. I was on antibiotics a fair amount, because I guess the infection in my tooth was causing me to get all sorts of infections in my body, and I needed antibiotics for one thing or another several times.

I finally grabbed the bull by the horns and had my tooth pulled. It was a molar, with a cap, and I guess the roots were rotting underneath because they had to be removed by a specialist who took them out in small pieces. I was none the wiser because it was under a beautiful looking cap (that just kept getting "inflammed").

Within DAYS, literally, all the spinal lesion problems STOPPED, and most of the symptoms went away.

GET YOUR TEETH FIXED, PLEASE!!! In the meantime, if you have infection, get on antibiotics!

I am glad you are not "apparently" in a flare though. Unfortunately, the "effectiveness" of most of the drugs we take seems to be measured by "new" or "enhancing" lesions . . . but that is obviously not the whole picture (maybe not even the important part) when it comes to this disease process. One good thing about having such a "relapse" and "lesion measurement" effective drug as Tysabri is that I think they are finally going to figure out that managing flares (apparent inflammation/enhancement) is not going to change disability progression much in the long run . . . then they can start looking at WHAT does need to be managed in order to affect our demise.

GET YOUR TEETH FIXED!!

Cherie

Hi Cherie,

Ya know, I was thinking the exact same thing, I am going to ask the dentist for antibiotics today, I FELT that maybe I had an infection in this tooth and it might be causing problems, i am telling him to give me antibiotics and see if things get better.
I don't have many teeth left I have "partials" upper and lower but maybe they ARE giving me infections.....

again THANKS for confirming my thoughts..............


Joe

Ok, now I can talk to your other points. I didn't want to take away from the importance of dealing with your teeth in my last posting.

(I'm curious to see if antibiotics take the edge off your symptoms, or if they stop things from escalating for at least the 10 days you are on them ...)

Did you have your last (prior) MRI at the beginning of the TM attack, in the middle, or towards the end? I didn't have mine till I was almost finished the 2nd attack (that's the only MRI I've ever had actually), and by that point it was partially healed. I have no idea how much it changed from start to finish, but it may be that your lesion was just starting out when you had your other MRI. So, to me, it would stand to reason that it appears bigger now (after going through the TM attack).

It is my understanding:

"Gadolinium is not necessary when only the spinal cord is examined.
Contrary to the brain there will only rarely be enhancement in the cord."

http://www.radiologyassistant.nl/en/4556dea65db62

So . . . if there is generally no enhancement visible in the spinal cord lesions, how does she know it is not "active"? I'd be very interested in the answer to that question (if you think to ask her) because I've often wondered what they use as an assessment of spinal lesion "activity" (if they don't usually enhance) ... except new symptoms and/or enlargement . . .???

I'm glad to hear your neuro is on-board for SSDI. You definitely have a great case for it, but you NEED your neuro's full endorsement on that too.

Like someone else said (RW?), antibodies can fluctuate in the first few months on Tysabri. The fact that you had an allergic reaction is reason to test you for antibodies, and to keep a close eye on you during the next infusion . . . but I would have thought they'd let you keep trying to see if things change (especially since your choices are so limited).

Your cyst isn't infected in any way, is it? I don't really know much about all that, but when I was reading about my adrenal "shadows", I read that they could get infected (hmmm ... or maybe that was my gallbladder problem ...?). Anyway, you want to avoid infection . . . but if the cysts are not causing you problems, I'd be inclined to let that problem slide for a while. Even surgery (anesthetic) throws me for a loop these years, so I'm putting my surgery off as long as possible. Good thing I have a high tolerance to pain.

Glad you are going to be dealing with your teeth ASAP.

Cherie

Hi Cherie,

Yes they compared this MRI to the one I originally had at the beggining of the relapse, the thing that gets ME is that these symptoms went AWAY and now are back again with a slight twist, more numbness and less pain.......

Now to the pancreas, I have a surgeon set up for Nov 3rd appt, i am working on that at the same time as this....

Now the TOOTH, I have been on an antibiotic now for 3 doses, i take it every 6 hours and have to get the tooth pulled on Monday, I'll let you know on the outcome of the antibiotics.........so FAR no difference.

That is what my neuro said about the lesion being bigger she said there is nothing to be alarmed about right NOW. i DO know that she does not mess with Tysabri protocol and she won't go beyond the recommendations, lets hope I don't have antibodies.......

My life is going in TOO many directions right now Cherie, I am TRYING to take things one at a time but it is difficult.....I have some support here but they are not with me ALL the time so on my "down" times it is frustratiing me...

I will definately let you know when I start to FEEL better, so far right NOW I don't. I have an ultrasound coming up on the ppancreas so we will just go from there.....antibiotics for the tooth, antibody test at the lab and SSDI application all sent in and waiting on the outcome, all I CAN do is wait...

I am doing all that I can right NOW so it is time to WAIT I guess.......

Thanks Cherie

Joe