Tomorrow morning is the day...

[ru4cats]

shel67
I'm glad that you are adjusting to the infusions. I'm 5 1/2 years in, and for me, day 1 is just like day 28. You are two infusions away from the Tysabri reaching saturation in your system which is required for the body's healing to begin, if it is to occur.
Early on I learned that at least for me, healing was a wish, not a certainty. Due to my age, I didn't have many reserve pathways left. I believe this is age dependent, and also dependent on how long you've had MS. I can't say I have experienced any healing of the symptoms that started before Tysabri, but I know it has delayed the onset of new symptoms. My brain MRI's have been stable since I started, and my brain volume is "normal" for a woman of my age. I hope you find healing you are looking for.
I'll also mention that somewhere I read that the healing from Tysabri can take up to three years. Keep the faith!

[frosty123]

Late start

shel67
Keep the faith!

I just had my 6th infusion December 22, no new active lesions and feeling about the same, so I am grateful. I too am older (57...really had to think hard to retrieve that number...scary) so it is difficult to know how much memory loss is normal aging or result of multiple brain lesions. In either event, I find this new normal very disturbing.

Last week I had a daughter of a former patient call to ask me to facilitate her moms funeral service. The daughter wanted me to repeat the words I had spoken at her moms deathbed 3 days previous. I not only had no recollection of what words/prayers I spoke, I also had no,none,nada recollection of the patient and/or family that I had ministered to just 3 days prior. Thank goodness I take notes after all my pastoral visits, sadly however my notes do not include a verbatim of conversations and prayer choices....

If 6 months is the magic number for Tysabri to become effective then I would like to say, BRING IT ON!

Wishing all of MSWorld a new year filled with peace, a cessation of symptoms, and promise for a cure.

I am grateful to have all of you that hold the light of information, experience and compassion. Moderators, thank you for your generous service!

Maggi

[ru4cats]

frosty123

I was diagnosed at 58 1/2, and I'm now almost 64 so I have a few years on you! I also wonder about my memory, but I've finally decided my days of "multi-tasking" is over. One thing at a time is all I can handle now.

My neurologist, who recommended I take Tysabri due to my "advanced age", also once gave me the sage advice that my MS would soon meet up with normal aging. Now whenever I mention a new ache or pain my husband says, "You know, that is a normal part of aging." Oh well...which came first...the cart or the horse, MS or normal aging.

Best of luck on Tysabri.

[allHailye2]

I also just had my 4th infusion...2 days ago. Everything seems to be going well. Nothing worthy to report good or bad.

[shel67]

Happy New Year! Thanks for the responses. I had my 5th infusion today and this last week I feel better. Crazy, I know but today was the closest I have been to feeling normal in a long, long time. It's different, something has improved. My symptoms feel better, improved. Crossing fingers this isn't a fluke. I have had no real side effects from this med.

Went to Nuro Monday and the tests that they do (walking and strength, that sorta thing) were all good, I scored faster on walking the the last time and doc said no weakness he can tell and the MRIs showed no new lesions and the old ones are a bit improved. I don't have any spine lesions, all my lesions are in my brain and doc said something like, it's a lot of sensory stuff, which a lot of my symptoms are vestibular and sensory. So Thank You God there is no new damage. I had those MRIs in the first week of November after only 3 infusions. Based on how I feel now I think there is more improvement. Thank God.

Frosty and RUCats, I'm 48 and I have had this MS for 5 years I know for sure. If I've had it longer it was very, very benign. I can remember 20 years ago some weirdness that in fact would fit MS and if I had this since I was very young, it's been benign. This past year has been my first real attacks as far as I'm concerned. I hope I caught this early enough. I hope I can get my balance back but I'm not holding my breath.

Thanks again for the replys. I've been thinking how in the world when I'm 70 am I going to deal with these symptoms I have? Is it true MS kinda dies down when you get older? I guess it's best to cross that bridge when I get to it.

[ru4cats]

Frosty and RUCats, I'm 48 and I have had this MS for 5 years I know for sure. If I've had it longer it was very, very benign. I can remember 20 years ago some weirdness that in fact would fit MS and if I had this since I was very young, it's been benign. This past year has been my first real attacks as far as I'm concerned. I hope I caught this early enough. I hope I can get my balance back but I'm not holding my breath.

Sounds like Tysabri is doing its job! Good news that you have no spinal lesions...they are much more difficult to recover from. You're 10 years younger than I when diagnosed, so you do have more reserve capacity than I had. Just remember the three year thing...I do believe this.

I saw my neurologist on Thursday, and although I haven't had a relapse since 2010, she and I agreed that we should keep on, keeping on... As she is fond of saying, "If it ain't broke, don't fix it." She still feels Tysabri is the best available drug for MS, even with all the new ones that have been recently approved. I hope you're also on Ampyra since you mentioned balance is an issue. The doc and I agreed that we would also stick with it, although with Medicare in my near future, covering it at a reasonable cost could prove interesting.

Unfortunately, I've learned aging does add a new complication when it comes to MS. However, since there's nothing that can be done, you just have to get on with it. Hopefully, 10 more additional years of Tysabri than I had will help.

[lindaincolorado]

YEA! that these posts are positive
I have been a Tysabri cheerleader for 9 years! I turned 67 in Dec, have been dx with ms since 1988, have a very positive outlook and thank G-d have done great. Between 4-6 mths in I got more energy/stamina, less fatigue, better N better MRIs. ms doesn't stop me from living my life and I live it big time-QOL... Thank G-d and Tysabri !!

I had hoped my R leg would get better, it didn't. I drag it, use the Bioness L300 for foot drop and a scooter for distance. I am VERY grateful that this is about it for me re ms and has been for approx 10yrs but, I had started to go downhill when I was given Ty. The slide stopped and progression halted

Happy New Year everyone and hope you all do well!!

[lindaincolorado]

p.s. I exercise, has been part of my life for a long time and I eat fairly healthy

[shel67]

Thank You Linda and Cats, The roller coaster is what's driving me nuts. I hope I still have reserves in my brain and can improve or at least go no further.

2 weeks feeling great, 2 weeks feeling like I had a flare or that I'm progressing. I posted a long post about it in anther thread.

Did any of this happen to y'all during your 40's? I'm really thinking it's related to hormonal fluctuation, premenstrual, perimenopause. Will actual menopause make it better or worse? From 43 till now, 48 I have had disease activity. If I had MS for the last 25 years, It's been benign.

With the ups and downs, I do not know how much more of this I can take. I feel okay now, didn't the last 2 weeks, felt great 2 weeks before that. Always, always feel better the day of and week of my cycle. Always.

What is going on with me?

[ru4cats]

PeriM and Menopause are the pits! My recommendation: Go on Prempro or something similar. My MS diagnosis came after menopause, but I ended up taking hormones I was SO miserable. I tried going "cold turkey" like my mom did, but the NP at my doctor's office reminded me that lack of sleep can be deadly! Now the bad news; I finally quit hormones a couple years ago cold turkey after 12 years, and I'm still having hot flashes (I actually call them warm flashes since they are bearable). Sometimes I wonder if it's not the MS, but whatever, it's now doable.

I haven't ever had a reaction to Tysabri like you're having. Maybe check with your OB-GYN and try a quick dose of hormones just to see if the symptoms abate. They all have free samples to give away, so it shouldn't cost you anything. Just a thought.

[shel67]

PeriM and Menopause are the pits! My recommendation: Go on Prempro or something similar. My MS diagnosis came after menopause, but I ended up taking hormones I was SO miserable. I tried going "cold turkey" like my mom did, but the NP at my doctor's office reminded me that lack of sleep can be deadly! Now the bad news; I finally quit hormones a couple years ago cold turkey after 12 years, and I'm still having hot flashes (I actually call them warm flashes since they are bearable). Sometimes I wonder if it's not the MS, but whatever, it's now doable.

I haven't ever had a reaction to Tysabri like you're having. Maybe check with your OB-GYN and try a quick dose of hormones just to see if the symptoms abate. They all have free samples to give away, so it shouldn't cost you anything. Just a thought.

Today was # 6. Symptoms feel good, I've felt real good this last week... I'm somewhat sway-ie but we'll see if the pattern begins again. I don't really know until I go to work and feel really off balance. The thing is I feel best during the time when menopause is supposed to be at it's worse. I feel best when the hormones are low. This is weird. It just be the Tysabri. The care point nurse is checking to see if I can experiment and go 5 or 6 weeks to see what happens.

But does MS itself do this? Fluctuating symptoms to such degrees during the month? My symptoms fluctuate through out the day, every day but I get this borderline non functioning ability about a week 1/2 during each month.

[ru4cats]

I certainly haven't experienced these problems, but you just had infusion 6 which means you've just hit "saturation level" in your system. I'd try to give yourself another 7 infusions to see if these strange symptoms don't start to stabilize, i.e. a full year. If you just can't do it, look at spreading the infusions out. I know others do, without a risk.

[shel67]

I'm feeling okay right now but the weird swaying feeling usually starts around 3 or 4 days in and lasts until the following week. It is very strange because underneath the swaying, that I can be sitting and feel it in my head, kinda like when you are really drunk, but underneath that I can feel that I am better. I move with better coordination and feel more balanced except for the swaying motion feeling. Very strange.

I'm hoping more saturation of the medicine does not mean stronger side effect if this is a side effect. Like with other medicines, does the Tysabri side effects go away after being on it for awhile?

[ru4cats]

If these feelings are a side effect of the Tysabri, they should go away, but then I've never had any side effects from the Tysabri. For me Day 1 is just like Day 28. Up until the 6th infusion, I did experience "Jonesing" like many others have. It was just a feeling that I needed another infusion of Tysabri. I just felt a little "off". After the infusion, I felt great. Give it a few more infusions to see if you stabilize. If not, you might need to look at another drug. Some, but not many, people just can't take Tysabri. Good luck.

[lindaincolorado]

For at least the 1st year ( even maybe 2) I would say I was jonesing for my infusion the 3rd week and, of course, had to wait till the last week. Our bodies handle the meds differently and Ty is no exception. Now I go every 8 weeks and do just fine My Neuro is doing a study on older people going off meds. I feel if it ain't broke don't fix it, so I choose to not be in the study

I hope you all do better N better