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Does your agent offer you a new plan each year at renewal time with different companies? Will you be able to start out with a different plan each year starting at an "unrated" dollar amount to keep your costs down? We get that offer each year from our agent. If I were on the plan I think we'd be forced to do that to keep costs down. For example, we're on a Midwest Security plan PPO now, and he offers us BC/BS of Illinois and another company at a lower "introductory rate" for the first year. If your agent did that each year you could change on that date if it works the same way in your situation. It would be a big pain for everyone on the plan switching everything over to the new carrier but it might keep your costs down. |
Welcome back, Wiz of the traveling salt!
I just found out some stuff about the plan I have for insurance. It's BCBS but it's the same plan our legislature has! I wonder if they are my group? I know that when the nonprofit organization I work for started they were the first of their kind in my state and I wonder if since we were state/federal funded, maybe that's where the policy came from and why I still have the insurance??? NO ONE sells this plan anymore. It will be interesting to see what the new administration does for health care here in the USA. I have high hopes! |
hi
I said i would post the costs when i found out. I was shocked...For thr drug in fl they put in for $4800 which is more than $500 less than NJ but recieved more than $3500 which is about $1500 more than NJ. That I could not figure out. They billed about thesame in each placee for the Dr visit and infusionandpaid the samebut the drug amount ws the big diffrence and that I did not understand. I have 1 more infusion next week in fl then i willl b bqck to my regular site have a great day laurie |
Infusion #(fill in the blank)
I had my infusion today, it went off without a hitch. The nurse is getting better and better at starting the drip. :) She's funny too, she laughs every time she takes my blood pressure, says it sounds like a drum in her ear. That and my good vein. I aim to please y'know. :D
It's no wonder I have to take a blood pressure pill, otherwise it'd probably be squirting out of my pores. :eek: I gave her hints on seed starting for early spring planting. She said she's going to try it. I am too after not doing so for almost ten years. RW, is this #21 or #22 for me? :confused: |
ROFL Wiz!
It's # 22, my Tysabri Twin! ( I had to actually count the vials on the Tysabri Wall!) Glad to hear it all went well! |
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The cost of the drug is different everywhere. It's all in where they get the drug from and hom many middlemen they go through! I got more information this week on mine. The infusion center goes through the pharmacy at the hospital they are associated with. That pharmacy goes through a pharmacy at a larger hospital that they have contracted through to save costs. THAT pharmacy does all the bulk ordering for their associated partners, and they go through their contracted pharmacy supply co, and then THAT supply co. gets it from ICS! It took a LOT of phone calls to get to the bottom of that road! They wouldn't tell me how much they paid at each step. I'm pushing to find out exactly how the cost is broken down step by step! |
I thought I'd help get us to 1000 so we can get a new thread!
I had #10 yesterday, and it was my best infusion by far! I've been getting a horrible case of the chills five minutes after the infusion is completed, and it lasts about 1/2 hour. Premedicating with benadryl didn't make a difference. I've learned that an aleve an hour before helps with any headaches. But after yesterday, I think the chills, and the fact my body tenses during that time were causing the headaches. It just went really well. I hope they all can be that way! There were a few different things. One, it had been five weeks since my last infusion because of a toenail fungus that looked like it may have infection, so I had that nail removed and they postponed ty for a week, and two I was still on Keflex from the toenail removal. I also took some hot chocolate that I sipped during the infusion. I think next infusion I'll keep the hot chocolate part, still premedicate with the Aleve an hour before, and hopefully I won't be on any antibiotic! |
I finally had infusion #10 yesterday. All went fine and I really needed it. My prior infusion was due on 12-3, but I had a neuro problem and had to find a new one. Now I have to drive 2 hrs for the infusion and I hate that. I seems I am back active again. I guess due to late infusion. I'm just praying this one pulls me out. B4 I missed the Dec one i seemed stable. So fingers crossed here. Just wanted to update.
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Remember that you CAN still have relapses while on Tysabri. It's ok to have a course of steroids too, the usual 3 day IVSM. Please let us know how it goes for you. :) Both of you have had # 10 now! How does it feel? Are you settling in to having an infusion rather than shots? Do you feel things have improved? Are you happy with Tysabri as a whole when compared to what you did before for DMT? |
Hi River - great to see u and all the old gang again. I stayed away, b/c there was nothing anyone could do till I found a new neuro., saw him... I hope all can understand.
I am happy to say that I love him and staff is great... Here everyone is treated the same and none of the suck up... - I found with my last. My new Neuro's name is mentioned in several of the new drug studies. My clinic was also one of hundreds that helped bring Ty on and helped bring it back. . It is hard here to find pro ty Dr. No idea why. Hence, I'll just have to deal w/a 2 hr drive. Small price to pay. I say this attack is due to lack of meds, but my eye went black for 5-10 sec at the time reg infusion was sch. New sx so I guess an attack while on. Old neuro wanted to pull me off - hence dismissed asap. BTW - not offered roids several times when asked. Dif. with new one. BTW - I hold private BCBS of my state - cost depends on how they bill. If they bill one way - I pay next to all - another 0. Another reason for drive. I could get Ty here - but would have to pay. |
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Cost IS a factor in the decision for most of us, whether on Ty or any other DMD. I know I wouldn't be able to afford to pay out what others have paid to stay on Tysabri. I'd research every avenue and bully my insurance co. and the med center and anyone else I had to if it came down to staying on or going off at this point. It is soooo darned nice to NOT have to worry week after week, wondering what's going to go haywire next and being scared of how to cover and deal with relapses when working and living life. I was ready to travel 200 miles to get Ty back when it was first returned to market. I just got lucky that the new neuro decided he liked sailing better than money at this point in his career! 20 miles is a whole lot better to swallow than 200 miles when it comes to traveling! I think a LOT of neuros haven't got time to do the continuing ed, to keep up on the data coming out about Ty, to do the research, or they are afraid (first, do no harm...) of what they have heard about Tysabri. It's the docs who ARE keeping up who are prescribing and giving MS patients a chance to have some QOL and reduction of symptoms and progression. Tysabri isn't the answer for everyone and it isn't a cure, but it IS the answer for me and my MS at this point, and for a whole lot of other folks too. As far as doing the "roids, my neuro put me on a course before I had my first infusion. I was in a relapse and his feeling was and is that NO relapse is a good relapse, that time IS brain, and that it's an all out no holds barred fight when it comes to retaining brain/CNS function, and I agree. Let us know how it goes!:) |
Had my 4th infusion today.
Iam very pleased with how I feel with it. Today after my infusion I got itchy so they kept me longer to watch me it gotsome better so I asked to leave. I was advisedto get Benadryl and I did on mmy way home. I took one had to go pickup my husband came back and took a nap. Well he picked up pizza for dinner. Oh well. How many of you see a Dr each time you get your infusion. I am just curious. I thought somone was suppose to ask if anything was new or something. Not here. I go back to my regular place next month. Nothing was new but it is very diffent here in Fl met dr last time because it was ny first time. Good luck to all laurie f |
RW -- I absolutely love this -- "Time is brain." :D I think that's what I need to tell myself if I ever get worried about the "risks" of being on Ty. It's so worth it for me. I have QOL which I did not have on Copaxone or the interferons--the side effects were worse than the disease.
I go for #8 in 6 days. Hard to believe it has been that long already. No symptoms or relapses! :) |
Thanks Natalie but credit for that phrase goes to Lauren Roberts (MsladyinCA) who said it back when Tysabri was withdrawn from market!
I used both that and the argument that having to "fail" on an interferon is an oxymoron, since MS in itself IS a failure, and "failing" is a given for anyone who has even ONE relapse, to get my point across to the neuros I saw during the interim between withdrawal and return to market. Silent damage is happening daily, even when we show no symptoms, relapses are a smack in the face dose of evidence that it's happening, and I LIKE all my neural pathways and I will be damned if I am not going to do everything in my power to keep them intact and working correctly! I still have faith that my brain can correct the damage it has suffered through my course with this disease, and that preventing relapses will give my brain a chance to heal itself. I may not be back where I was before diagnosis but I am a lot closer than I was even a year ago, nevermind when I first started! IT'S NUMBER 23 THURSDAY FOR ME!! :eek: :D |
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I had the itchies too after many of my infusions. It's just a pinpoint itch, but the doc said to do 25 mg. Benadryl and 1000 mg.Tylenol pre-infusion after the first couple of times. The benadryl didn't do a thing for it, so I don't do either anymore (the doc knows this) I went through a period of trying to eliminate every variable to see if I could find the cause. We finally figured out that for me, it seemed to be after about 2/3 of the bag was infused and that it was probably the mix separating, so now we rotate the bag a few times during infusion and that seems to have taken care of it! I also never scratch the itch since it will release histamines and make it worse. I see my neuro every three months. I don't see him during my infusion, but he's right down the hall at the med center.. My nurses follow the TOUCH protocol to the letter, ask the questions and fill out the papers and the whole thing before they call pharmacist to bring the drug. I see the checklist, watch them check it off as they ask and see them fax it to Biogen Idec while I am being infused. The protocol states that every one of the questions has to be asked EVERY time. The form needs to be faxed within 4 hours of infusion. When it is not received, Biogen calls my infusion center and asks why! If an infusion is cancelled, the infusion center still faxes the paperwork with the rescheduled date and time on it, and the reason why it was cancelled. I told the nurses when we first started all this that I wanted them to follow the protocol to the letter, since I was the first patient. I wanted them to be able to do it every time, to have it be a habit for them, and after 22 infusions, it is. There are a lot of patients on Tysabri using this infusion center now and the nurses make sure they treat every one of them the same and follow the protocol. Glad it all went well!:) |
Thanks Riverwild
Thats what I thought someone was suppose to do. The first person called my name and said sit here. She took my temp and bp told me my bp then drew my blood. Did not even look my way says you can leave now. That was it next stop. More friendly but no real questions other than how have you been. That was it. Hope everyone has a great day. I am feeling better today and am very happy to be on Ty.The night after the infusion I continue to feel nauseus and dizzy but its worth it laurie f |
Thanks River for your words of kindness and encouragement as always.
#10 was by far my best infusion. I've even spent this past week at a conference in Boise, not sleeping particularly well in a strange room/bed, but still having plenty of energy to do what needs to be done. I went and had bloodwork Monday before I left for Boise, and Tuesday my neuro nurse called and said it was perfect! I go and see my neuro next week for my 3 month checkup and I'll tell him how great my last infusion was! I am going to talk to him about my weight gain also, and see if he has any suggestions. I get up and do a walk fitness dvd that is a great workout, but I don't seem to be able to lose anything. I thought maybe something that would help with fatigue and weight together, which some of them do, but provigil doesn't seem to help in either area for me! Well, I need to get to bed to prepare for work tomorrow after 4 days of being away! It will be busy. |
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If you get an answer for the weight/fatigue combo thang, SHARE! I keep trying to lose the weight I put on after diagnosis, but it keeps finding me!:winky: |
#23 down!
Holy Moley, it's almost TWO years! I actually am having the infusion on my anniversary date in May. I told the nurses we are going to have another party! It was a very slow day at Ye Olde Infusion Bar and Grille today, so a few of the nurses sat around and chatted with me and we reminisced about the first day and the screwups that happened the first few times (wrong mix on the very first infusion, drug didn't come on time for the second one, the itchies, etc.) The nurses here have been with me from the start. They are a GREAT group, professionals in every sense of the word, and I am lucky to have them! They used to only do oncology and the occasional steroid infusions, but are now doing a LOT of infused drugs for a lot of different diseases. The pace of Tysabri patients has picked up and they will eventually have to open more infusion suites (everyone gets their own little room due to privacy laws) They still make me sit there until the hour is up after the infusion. I am NOT good at waiting, but I just make myself relax and read or watch TV and remind myself that it's protocol!:cool: Life is GOOD!:) |
Hugs everyone..... just because I wanted to! :grouphug:
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Riverwild
I saw you wrote each person gets their own suite I am happy that neither of the 2 sites I have gone to do it that way. In NJ 2 big rooms chairs all around with space in between. In Fl one small room 8 chairs one right next to each other and up against the wall so you cant put the back down torelax .But people talk to each other which for me maakes the time go faster. Take caare laurie f |
Question for you Tysabri veterans:
I'm supposed to get infusion #8 on Monday. Yesterday I developed a garden variety cold (low grade fever, mild cough, sore throat, congestion). Can I still get the infusion? I know it's best not to have one with heavy duty infections but what about a simple cold? If you can believe it, I haven't had a cold in 10 years. I think my immune system has been in overdrive. ;) |
My neuro wouldn't let me! I thought I was fine, but he is very cautious, made me wait a week.
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Whether you get the infusion or not is up to your doctor. When you tell the staff, they will call the doc. Some docs say no problem, and some say let the illness pass, depends on the doc. I have an abscessed widom tooth. It started Friday night and Saturday I called my dentist and he prescribed amoxicillin 875 mg. BID. I called the neuro and asked if I would have any problems, since I just had my infusion. His reply was "Do you want to get rid of the infection? TAKE it!":cool: And yes, not only did they both call me back on a Saturday, but the dentist called in the scrip and told me to stop by on Monday morning when I get out of work and he will check me out and schedule the extraction! It already feels better, the derned throbbing has stopped and the pressure has lessened. This after only three of those horse sized pills! :D I think my body is hyperdriving the infection off! You may not even have symptoms of that cold by the time you get to infusion Monday!:hug: |
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It's get up and wander or sleep for me!:p |
RW, I hope the tooth is feeling better after the horse size antibiotics! :)
I talked to the nurse at my infusion clinic by phone. I cannot have the infusion. In fact, he said I need to wait at least 2 weeks to insure the virus is out of my body and I have recovered. His argument was that Tysabri can cause respiratory infections due to immune system suppression and sometimes it takes longer to recover from them so I need to be totally healthy before the infusion. 2 weeks seems like a lot! But I guess better safe than sorry? |
I got the same word from the dentist this morning, that he has done some reading about Tysabri and he won't pull the tooth until the infection is gone. I am on an 8 day course of the horse pills and then I go in and get rechecked and get it extracted if the infection is gone.
It's funny, when I went in Thurs. to get my infusion, the nurse commented on the fact that I had a higher temp than normal-99, as opposed to my usual 97 or so. She asked if I had anything going on and I said no, but then Friday...WHAM! with the tooth. I didn't feel any different or have any signs of trouble even with the elevated temp, so we went ahead with the infusion. It still hurts. I've had 5 of those pills now and the throbbing and pressure pain is gone, but it still hurts. My ear hurts, my throat hurts, my jaw hurts, my gum hurts and I want this sucker OUT! Why do we have wisdom teeth anyway? The top ones never erupted and I already got rid of the other one years ago cause it was crowding out my front bottom teeth! Now I hear that because this one was in for so long, the molar in front of it may loosen when the wisdom tooth is gone. It's a slow downward spiral and for someone who has always brushed and flossed and didn't have a cavity until I was 15, this is just a giant pain in the rump! ARRRGH! |
Sorry about the tooth River! It sounds miserable.
I may have had to have the toenail removed - and it hurt - but I don't have any wisdom teeth! I was lucky to have been born with zero. All four of my siblings had all four that had to be removed because they were impacted. Now, I had four boys and when they were born, I said, "You are blessed with no wisdom teeth!" The oldest had one, the second, two, the third had zero, and the last had two. So out of a possible 16, we only ended up with five - and I'd say that is pretty good. The funny side of this story is that my husband had to have a colonoscopy at a much younger age than most men because a sibling had some polyps. He ended up having some also, so he is on the three year colonoscopy schedule, and his sons will have to start having them at the age of 35! So I remind my sons that there mother gave them "no wisdom teeth" and their father gave them colonoscopies!!! (We won't talk about MS.) |
Polyps, impacted wisdom teeth, bad toenails....gahhh, it seems like more and more stuff falls apart as you keep getting older. :D
RW, I'm sorry for the tooth pain. That is just no fun. :( I had an appointment with my neurologist today. It was supposed to be my #6 infusion check up but I did that with the nurse in Dec. since the doc was overscheduled around the holidays. I was also supposed to have the #8 infusion today but given the viral cold they said no. The neuro agreed with the infusion nurse that there was no harm in waiting 2 more weeks until the cold was completely gone. I still have some cough and congestion. She seemed to think waiting 1 week would be fine too. I think I told you this before but my neuro has MS and is on Tysabri. I'm not sure yet if I like that my neuro has MS too. But that is a whole other story! I asked her about the protocol at the Multiple Sclerosis Research Center in New York (which was a spinal tap, blood serum test, and MRI every 6 months to watch for PML). She thought it might be on the aggressive side, having to get a spinal tap every 6 months. She had discussed with other neuros that 1) the spinal tap headache seemed to be worse if you were already on Tysabri 2) the hole to reach the spinal fluid was more likely not to close up as quickly, thereby letting more fluid keep leaking, because of the immunosuppression from Tysabri. Anyhow, my clinic already tests my blood every 3 months for the JC virus. She told me if I wanted to have a spinal tap at the 12 or 15 month mark I could to check for JCV for peace of mind about PML. I guess I can think on that one. Also, one of the researchers at my MS clinic just published a piece in the Archives of Neurology suggesting the possibility of taking a "holiday" from Tysabri. He discovered there were fewer immune cells called CD4 T cells in the brain of people on Tysabri and perhaps this increased the risk for PML. By taking a holiday one could allow those immune cells to build up again. My neuro said there was debate amongst the doctors in the clinic about this suggestion. Her concern was that if you take a Tysabri holiday for any reason your risk for developing antibodies goes up if you try to go back on the drug. And then the drug becomes useless. I'm still pretty new to this and sometimes I find these visits to be quite frustrating because there are never any "right" or "definitive" answers to the long detailed questions I ask. Sometimes I wish the neuro could say "Okay, do this, do that, make this decision, and then everything will turn out this way...." I guess it doesn't work like that, right? :( |
Hang in there everyone!
I hope that things go your way.:) -Vic |
Today's issue of Neurology: http://www.neurology.org/current.shtml
Natalizumab: Bound to rebound? Neurology 2009 72: 392-393. Immunologic, clinical, and radiologic status 14 months after cessation of natalizumab therapy Neurology 2009 72: 396-401. Effect of plasma exchange in accelerating natalizumab clearance and restoring leukocyte function Neurology 2009 72: 402-409 Elan website PDF about Cleveland Clinic and PLEX use for PML: http://www.elan.com/images/Cleveland...essRelease.pdf |
That is great news! I wish I could read the Neurology today article, but I did get to the other one.
Hopefully being vigilant will keep PML at bay. I know my 3 month bloodwork was perfect - and I'm feeling fine, so that is all good news. Now if you just didn't have to have a LP to know if you're carrying the virus???? |
RW, thanks for the heads up on the latest on Tysabri! :)
Here is a video that includes a brief clip/interview with the doctor who did the plasma exchange testing with Tysabri. Keep in mind this has a business/market slant since it's from CNBC. http://www.cnbc.com/id/15840232?video=1019840600&play=1 |
MS Patients Treated with TYSABRIŽ Remain Free of Disease Activity for Two Years, According to Data Published in the Lancet Neurology
http://www.pr-inside.com/ms-patients...n-r1048862.htm |
I had my quarterly liver panel and it was fine. Also had a good general checkup. My PCP is retiring in six months though... I've sure been sleeping well, got 22 hours in two nights this weekend! :)
I didn't get all that much done but I sure got rested up! |
Just had my yearly MRI. I'll let you know if it shows no increase in lesions for the 10 months I've been on Ty!
Thanks River for the great news. |
I found some information on the new PML patient.
Her husband is blogging and has posted on an MS board in Germany.He wants people to know what to look for and what the procedure is when someone is diagnosed with PML. Female, German, no age listed. The link below is for his blog and you can translate it through Google, comes out a little rough, but you'll get the drift. http://chefarztfrau.de/?page_id=418#comment-22427 He says she is ok, has had three PLEX treatments so far and will be back home in 2 weeks or so. What she was on for prior treatment since 1996: Endoxan - has not helped Duration of prednisolone therapy - has not helped Imurek ( Azathioprine ) - has not helped, but it gave her pancreatic insufficiency Betaferon - has helped a little Mitoxantrone - the best , had almost no relapses during this time unfortunately had to be discontinued because the life dose had been exceeded. The distance of the last Mito-treatment to the 1 Tys-infusion was more than a year. He followed with a list of what he saw in her affect and behavior so others would know what to look for. It doesn't translate well but you get the picture: Memory Rarely visited places such as supermarket, bakery, hairdresser, etc., are not known. Local difficulties, little sense of orientation. Even places that are visited more often, are not known (eg, doctor's office every month). With music from the radio, the artist is no longer recognized - previously not a problem. Voices and names may be famous people and friends no longer be assigned. But:with some help, such as giving the first name, the answer is immediately given. Compared with a hard drive disk without Table of Contents: Data are there but where? Things will be forgotten at the moment (food on the table and forget callback phone, cell phone or lost keys). When demand is not known what the day was done. Repeat different events again and again - almost literally. Long-term memory is usually not a problem - eg The school learned the Russian language is still very good. General Knowledge, English language, grammar is not a problem. 2. Cognitive Thinking Is very impaired. The clock reading makes progressive problems (including several requests), and often do not know what day of the week or date, we have. simple math in general does not work anymore, always comes back to others and incorrect results. Explain the problems of things must be said repeatedly. Logical understanding of a variety of things missing. Some things will be misinterpreted despite clear. Clinging to false ideas even stated that these are wrong. Jokes are sometimes not understood. Partial alien world views. But: Still happy, laughs and fun. 3. Hypersensitivity of the senses Listen (everything is too loud) Flavor (all too salty, too spicy - is demonstrably not so) Temperature (often too cold to bear even for the distance of 10 m to the car gloves) Pain (even moderate bumping is considered to be very painful ) 4. Fatigue Fatigue is always present but has become very extreme. Striking after meals or smaller activities. 5. Inertia Everything takes extremely long. Morning or evening in the bathroom about 1 hour A few things in dishwasher admit 30 - 60 min. Food: breakfast, lunch or dinner at least 1 hour. 6. Motivation No longing to do different things. Washed clothes for sorting is taking two weeks. When pointing out - the answer: No time. Tablets were previously prepared for a week, now max. for a day. 7. Mild aggression Changed behavior even at small things that otherwise were not a big issue. Arguments are more aggressive than usual In order to exclude PML, two things must be done 1. MRI: The MRI should not be a striking image which. PML samples may be the expert of MS stoves usually differ. If the MRI is a prominent PML and it probably goes to the next investigation. 2. Liquor: The DNA of JC virus in cerebrospinal fluid must be negative. Will he demonstrated, is a PML of evidence for themselves. But beware: The first laboratory could not demonstrate JCV. Only a 2nd Specialized laboratory, the DNA of the JCV isolate. That was one of the other PML cases as well. The DOC should preferably two tubes nerve tap water (then it hurts only once) and at two different laboratories send. The times so far to the Syptomen. I would like to note that this weeks slowly developed. At first you think nothing is there. Anyone who has MS knows that: day, where it is going well and others where it is worse. That should of course try to delineate. Nevertheless, the smallest doubt prefer to look. The sooner PML is detected the better the recovery process and possibly consequential. More on this topic and how it was dealt with in my next comment. ----------------------------------------------------------------------- The following therapies were carried out: 10 days every 8 hours Zovirax (antivirus resources) 3 x plasmapheresis (tys is washed from the blood) Viren-binding compounds (name and dosage are not known to me) Bladder-modulating, discontinuation of all meds (unrestricted Urine- release) That's really it. Much more - unfortunately not. And also the last. After so many cortisone treatments and chemo (mitoxantrone) there are only a few usable veins. Under these circumstances, to find three veins every day is not easy. But things went fine. For plasmapheresis you need an extra entry into the neck-vene and this catheder needs to be sewed on. This so-called Sheldon catheter is quite uncomfortable. Not because it hurts but it bothers simply on the side (rubs when turning the head and pushes at night when lying). Is not exactly a small part. The plasma exchange can go on the cycle, but is not painful. My wife has tolerated without complications. After the tys is washed from the blood - it means waiting. Repeatedly MRI to monitor and further Liquor-checks whether the virus has reduced in number. At the moment, it looks quite good. In recent MRI has revealed no other lesions that do not absorb contrast. In this case positive, because PML lesions take no contrast. The clinical picture has improved significantly. Many of the symptoms have significantly improved - or are even decreased. Now we must hope that the immune system does not act up and no IRIS (immune reconstitution inflammatory syndrome) will show up. My wife will still stay for observation in the hospital for about 1-2 weeks. after a total of 4-5 weeks, she will then be happy to return home to stay. ---------------------------------------------------------------------- My personal thanks to "Ridge" who found the site and posted it first to another board! Her help is invaluable with the .de boards and translating and I appreciate all the work she does! She's one of the good guys and she is on our side and when she posts from across the pond you can rely on the fact that she has done her homework previous to posting! :) |
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Give me a day or two and I will send the articles to you if you like :hug: I gotta get through two more 12 hour shifts and an extraction of that stupid wisdom tooth!:D How was your MRI? |
Bad news from Brenda tonight! I had an insulin resistance test yesterday morning, and my MRI in the afternoon. When my neuro's called and left me a message to call her back, I feared the insulin test was bad!
It shows I have a moderate level of resistance, and I'll have to come in and talk about that further. It could be good in that it will force me on a diet, possibly with medication, to get my weight and insulin under control. I was expecting as much since my dad is Type 2, I'm overweight, and I have high BP. I was not expecting a bad MRI :mad:! The MRI showed two more lesions and that my disease is progressing. I will be going in for an antibody test on Thursday along with seeing my neuro! I just don't get it! I don't have any symptoms other than that tingly hand and being a little wobbly with balance at times. My mind is as good as ever! My eyes get blurrier when tired lately, but I've never been on steroids for any of this MS stuff! I wouldn't even know I had the dang disease if I didn't have the MRIs. My neuro must be worried also. He can't figure out why the disease is progressing on Ty unless I have antibodies. What am I going to try next if I have antibodies? On Avonex, the disease progressed. Rebif, disease seemed to stabilize but I itched all over, had a patch of psoriasis that didn't go away, and was tired all the time. Neuro thought it was probably allergic reaction of some kind. I'm guessing he'll try Copaxone, but I don't know! I'm very discouraged tonight. I thought everything was going so well, it just through me for a loop! Add stress from work and the world is not pretty tonight. |
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Jeez, where's the good news? I think you should try NOT to worry (I know that's easier said than done) until you talk to the neuro personally and find out the results from the antibody test. Was your last MRI before you started on Tysabri? Is it possible that those lesions were there before you started? Write down all the questions running through your head before you go so you will remember them and ask them. TRY not to stress until you have more answers! Let us know what comes out of it all. We're pulling for YOU!:grouphug: |
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