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Tysabri Allergic Reaction
Hi All,
I went for infusion #2 today and after a few UNsuccesful tries they FINALLY got a vein to use on me, they sugessted I get a port........Duh, that is what I wanted from the start......BUT after the whole dose of Ty went in I developed a slight red blotchyness on my arms and stomach.......they gave me IV benedryl and took a vile of blood from me to check for antibodies. i would think that I should be OK for Tysabri in the future because it was such a slight reaction BUT the blood work will tell the story on if I stay on it or not.. This is IT for me as far a the CRAB drugs go, I have tried them all, ty is my one last hope........ Has anyone else had this problem? Thanks Joe |
Hi Joe!
Sorry to hear about your rashy stuff! Your neuro may have you pretreat with Benadryl and tylenol before infusion now. I have had pinpoint itching during infusion for awhile now. It doesn't get worse, there's no physical evidence, no further signs or symptoms involved. I am trying to get to the bottom of it during infusion. I noticed that the mixture in the IV bag seemed to be separating towards the end of infusion , so last month we rotated the bag a few times and no itchies. Have you posted this on the Tysabri thread? Maybe you will get a response from someone who is now or has been on Ty and has had these symptoms. I hope it works out for you! Please let us know how it comes out!:) |
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I hope this explains the antibody stuff for you! |
I am sorry!:hug:
(I am so glad I was sitting down when I read your post by the way!) |
i'm sorry about the reaction joe.
i hope you can con't with the med. but sometimes reactions will only get worse. i'm sure they'll let you know. good luck. |
You aren't using Benadryl now, Joe? Many people do . . . although I don't necessarily agree. I always avoid allergens, personally.
I've heard of some that Benadryl does the trick, and others where the next reaction (after one like this) is much worse. PLEASE make sure someone stays with you next time, or there is a good emergency notification. I hope you are one that can manage the allergy though, as I know you had high hopes for this treatment option. :hug: Cherie |
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I hope you have a better time with your next infusion Joe. I did give you a link to some information in my post above. I hope it helps. |
Av8Girl, I did get the link it took me to the Ty page, I didn't know where to go from there?
Cherie, Yes they gave me Benedryl after I had the reaction, then they took a blood sample, I don't know if the neuro is going to keep me on it or not...it was a very slight reaction but as you say it could be get worse with the next one. I am still numb from chest to waist and now BOTH my hands are numb.......I had an MRI of just the neck on Friday, now they think I may have a disc slipping back there...........i have HAD it with doctors, this is ridiculas.........unfortunately there are no other neuros for MS up here in this forsaken town........everybody sais do not give up well I feel as if the docs have no clue, after 3 months of treatment for TM related to MS, NOW they look into a slipping disc? I am ALMOST right back to square one with numbness the only thing I don't have NOW that I had then is the pain and NOW both hands are numb, they weren't before.. I have HAD it......... Thanks all for the replies, if anyone else can chime in I would apprecate it also, it seems like everybody HERE knows more than my doctors!!! Thanks Joe |
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"Do not receive TYSABRI, if you: . have PML . are allergic to TYSABRI . Allergic reactions including serious allergic reactions. Symptoms can include: . hives . itching . . trouble breathing . chest pain . dizziness . chills . rash . nausea . flushing of skin . low blood pressure" http://www.fda.gov/cder/foi/label/20...104s015lbl.pdf However, I am aware (even from our Tysabri thread here), that a lot of people are advised to take antihisitimines before they are infused, so undoubtedly some allergic reactions will go unnoticed (be "masked" by the the antihistimines), especially if they are not very serious or persistent. Cherie |
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Since you've already had a reaction, I think I'd be asking for it BEFORE the next time. Maybe that will be enough to ward off future reactions . . . My concern is always escalating reactions to allergens, which seems to happen for me. I can be fine using something, even for a long time, but once I have that first reaction, the second one is usually worse. Of course I hope that is not the case for you, but like I said, please make sure they are watching over you well next time.:hug: Quote:
It is possible this is a disc problem TOO (I keep trying to convince my doc & neuro that that is all my problem is :rolleyes:), and I guess the reason I am hoping that is true for you is because you don't have the pain this time. That is a tell-tale TM symptom . . . but I know people who have had disc problems that don't get that same "hug" or swollen feeling pain like we do. They usually have like an ache that follows along the nerve, from the disc down the arm, etc. I would sure be glad for you if this was a disc problem, because at least you can fix this (usually) with serious PT therapy. My ex had a disc problem and it took about 6 months of intense therapy (EVERY DAY for several hours), but he has very little problems from it now and a very strenuous job. Didn't they see lesions in your C-spine? You described a TM attack as well as anyone I've ever run across, so I really think that's what you had. It is possible that this is something different . . . but I'd like to hear more about what's been going on lately . . . Cherie |
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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 Quote:
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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 Quote:
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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. :confused: 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! :eek: 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 Quote:
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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 Quote:
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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. :D
(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). :confused: 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). :confused: 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 Quote:
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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. :hug: 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 Quote:
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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. :rolleyes: (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. :mad: 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. :confused: 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 Quote:
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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 |
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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. :hug: 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 Quote:
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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. :mad: 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:rolleyes:). :(
Hope you are feeling ok, Joe, and this is the start of recovery. :hug: 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 Quote:
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:Dancing-Chilli: Glad to hear the tooth extraction was easy, and you are "feeling" a little better. :) If this stir-up was due to infection, you should be feeling better in no time. Just make sure to not get the "hole" infected now (or dry rot), Mr. :cool: Cherie |
hi Cherie,
The tooth and socket went fine, I finished off the antibiotics and have had some really good cog fog days and feeling good but the arm issues and the "trunk" numbness is still here along with my hands being numb, I guess THAT stuff will take longer to resolve..........Now I will shift over to the pancreas cyst, I have an appointment with the doc at 1:00 today, I want it DRAINED because it has been giving me trouble......we'll see what HE says, I have not even MET the guy yet, I might not even LIKE him...........:confused: I still have NOT heard about the antibody test, I will call the neuro's office today if they do not call me.... My doc increased my neurontin to help with the arm troubles and it has seemed to help a little with the duration of these attacks it DOES work.......wow, I didn't have aby faith in that drug before but now I know it works...:) Joe Quote:
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Hi Cherie,
Good news is I have NO antibodies to the Tysabri and can continue with the infusions with a few things to pre-medicate with, (Benedryl and Pepcid). Kind of bad news is that I may not be able to get the PORT before the 17th which is my next infusion, I hope that is not the case and I can get it soon......She did say I probably have some imflamation of all the lesions again that was triggered from the infected tooth making me feel like I was back in the original relapse.... Also good news is that she talked to the pancreas surgeon and I CAN have the surgery, but she also said that it COULD trigger another relapse but is not sure and said we will deal with THAT if it comes......One thing I haven't told you yet is on Monday the surgeon said I don't have a "cyst" on my pancreas, it is a "Mass" that has been growing for a number of years and he wants to remove about a quarter of my pancreas, (near the bottom quarter)......I do feel a bit better in my "cog fog" but that is about it and I think I attribute that to the Tysabri. SO in conclusion, I have to take care of the pancreas and can continue the Tysabri and my SSDI is also in the works........I feel good about all things now and for the time being all is going as hoped and prayed for.....:) Thanks Cherie, I will keep you posted on things...:) Joe Quote:
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Good to hear that your antibody test came back negative!:)
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I hope they can get that port in before the next infusion too. :hug: I have had 2 or 3 operations since the MS became a driving force in my life, and the only problem I've had is recovering from the anesthetic. Being a smoker, I used to be up and about within 15 min of any surgery, but now I find that I am too wiped out to care much. What used to take 2 or 3 days to recover from now takes a week . . . but I have never had a relapse. Since you and I seem to be on a similar path, I'd say you are going to be just fine. Just expect more recovery time ... but that's not too bad when we don't have to work. Do we need our pancreas for anything . . . or is it like the gallbladder and tonsils that are not so necessary? The cog fog should continue to improve over the coming months, at least if you follow the same pattern as I have. All up, it was about 18 months before I totally felt like "me" again . . . but the good news is that you shouldn't have to go through that type of TM attack again. Once is enough, eh? :p (Just don't ignore infection cause it can lead to a full blown attack next time!!). Glad to hear things are looking up for you. Cherie |
Hi Cherie,
I don't know if we DO need a panceas for anything, I think there are meds we can take to help with the pancreas actions..............heck, there are meds for EVERYTHING these days..... I know I am going to be OK, I had to call my neuro today because my "T" lesion has been acting up causing just about all the numbness I had at the beginning to return. I feel JUST like I did in July, MINUS the pain. This is STRANGE that I am right back to where I was in July except no pain but all the numbness plus a bit more? Thanks for the words, we are similar except for the similarities in the veins huh? I have 11 days for them to get a port in me, the neuro did say that they do have patients pre-medicating with Benadryl and Pepcid with their Tysabri and they are doing fine, I also have to remember that I am 4 months into all my OTHER issues too and I am taking care of THEM as well and they are close to solutions..... Oh, don't we just have a fun filled life.........:D Hugs back at ya Cherie, :hug: Thanks Joe Quote:
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