hello my name is Molly. I have relapsing remitting MS. Diagnosed in 2003. I've tried avonex and rebif with terrible side effects. I had my first infusion of Tysabri on the 22nd. I am looking to get as much information as possible from others who are on Tysabi. No side effects yet. I'm still unsure if I will stay on this drug. I am a little anxious. Maybe hearing other's experiences will help me with my decision. Thanks for reading! Molly

Welcome, Molly...So nice to meet you.:)

There is a Tysabri sticky thread at the top of the page, where you found this one. We have quite a few braving TY, so join right into the convo..:hug:

Hi, I'm Ken

I'm here as a result of Braintalk being down. I sorta feel a little lost, this being a new place an all. But, I'm sure that won't last too long. I'd post at Braintalk in bursts and was just getting back into it, when the thing did a John Madden "BAMMM!". So I'm here now.

Ok, I'm not new to MS message boards. I have also posted a good bit at ThisIsMS and CPnhelp. My wife who has MS has been RRMS for 16 years and more recently SPMS for 4 is doing really well on the Vanderbilt Antibiotic Protocol. I'm a determined reader. I spent years reading and writing about MS in an effort to understand it and we've been through Avonex, Copaxone, IVIG and Novantrone. We finally found ABX and now Kim has a reversal of symptoms. I am new here, but not new to MS.

Ken

Ken, that's wonderful that you've taken such an active role in your wife's MS. It's such a mysterious disease and can really place a wedge between couples if the one who doesn't have it doesn't "get it".

Welcome to NT and I hope you enjoy it here. :)

Welcome to NeuroTalk, Ken, Nice to meet you..:)

I think you just answered my question to you on another thread.....I am happy to hear that your Wife is doing well and actually improving with the ABX treatment.:) I wish is would work that well on everyone with MS.

Thanks for being such a great support for your DW.:hug:

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Hello Molly, and welcome to the Neurotalk MS forum!

I want to wish you all the best with your Tysabri infusions.

Hello my name is Molly. I was diagnosed with relapsing remitting MS about six years ago, but as I'm sure you all have I experienced I had symptoms at least five years before that. I have been on Avonex, Rebif, Tried Copaxone(toture!) and now since my disease is still progressing fast. So now I am starting Tysabri. I did my first infusion on July22. I'm having some anxiety about the risk of PML and am hoping to get some comfort in the form of information and personal experience from others also on Tysabri.

Hello All,

My name is Carla dx with RR MS in 2006 and more recently Fibro and RA. I am no longer able to work and am awaiting SSDI decision :eek:. I live in Sunny FL with my 3 fur babies who love my being home all the time :rolleyes:. I moved to FL in 2004 to be closer to all my family and things just kinda went downhill from there LOL.

Anywho I'm glad I found this site.

:grouphug:

Hi Carla..:Wave-Hello:.. Welcome to NeuroTalk.:)

It looks like you have a full boat with all your DXes..:eek: So Sorry. It sounds like you have a great attitude, though. I like that..:D

Just join in anywhere and I hope you enjoy your stay.:hug:

My name is Angie
 

Hello all!!!

my name is Angie and have been diagnosed for a little over 3 years (after the birth of my daughter who will be 4 now) - yes, it took about 1 year to find out what was wrong with me. Although I had my first real attack about 6 years earlier (had blurred vision in my left eye for a few months) - nobody found anything wrong with me then. actually also had other symptoms earlier than that - but did not make anything of it. I have been on medication for a little over 2 years - but not really happy with the results, I feel like I have gotten worse :(. I have an appointment with my neuro in a couple of weeks - I would like to discuss other options with him.

I will be 42 in october, and still having a hard time with everything. Leg weakness, tired - a 4 year old daughter - I feel there is a lot happening....

I am glad I found this site - wish I could have more time looking through all the posts.

good luck all and hope to chat more soon...

Hi Angie and welcome to the group! :welcome_sign: Sorry to hear about your diagnosis but you've found the right place to hang out. There's a large MS community here. We also have a forum called The Stumble Inn where we just visit and talk about stuff other than MS. Here's the link to that forum:

http://neurotalk.psychcentral.com/forum102.html

Welcome Angie....nice to meet you..:hug:

If you look at my join date you can see I'm not new, but then again............

I am:rolleyes:

hey folks

Pierre

PETER!!!! It's YOU!!!!! :D:D:D

Yup it's me Peggy. Kind of hot today in southern Vt. How is it up north?

This is probably not the best day to mow my lawn......................

83, feels like 103. *pant pant* Does your mower have A/C? :cool:

Hope to see you often on the various forums here (I like to think of them as neighborhoods)

It's 86 here, the mower doesn't have AC but it does have a nice sun shade.

If I drive it full throttle it's almost like AC. :winky:

Hi Pete, how have you been? Welcome back..:hug:

Hey Sally, Things are okay I guess. I'm working full time again which may or may not be a good thing.

Time will tell I guess.....................

Might I have MS?
 

I joined to find info on ECT for major depression in 7/09. Now, in participating in this forum, I recognize many symptoms of possible MS - bladder, esophageal and back spasms, extreme fatigue, major depression - most of life, numbness in R arm and leg, incontinence, intolerance of physical activity, tremors, severe sleep disturbance, some hx of double vision, prior to cataract surgery, bilateral; several initial dx's of glaucoma, which further testing ruled out each time; cognitive/memory problems. I have a neuro but he sees me only for tremors. I think the problem may be multiple drs; multiple dx's; no one putting everything together. I am not sure I can find your response on this board but hope to hear from someone. Thank You and Bless You for this forum. billie

Hi Billy..:) My advise is to ask your Neuro to test you for possible MS. Report back and let us know how you are doing..:hug:

Hi Billie. I certainly hope you don't have MS.....but if you do you're in good company here. Like Sally suggested, you should ask your doctor to test for it and to eliminate other conditions that mimic MS. There are many that do.

It's never too late to be a newbie, right?
 

Hi Everyone,
I suppose I've been here a little while and I thought I should backtrack and let you know a little bit about me.

I don't have MS, but my wife does :circlelove: . I'd gladly swap legs with her if I thought it would help, I want so much for her to be rid of this illness. She is mostly upbeat about it, but I'm sure you know there are down times too. I'm an obsessive compulsive accountant and I've never done well with grey areas. There is a stereotype about accountants being all 1's or 0's, I'm kinda like that. But, I've actually got a sense of humor, something not ordinarily associated with accountants. When I started working as an accountant (I don't tell short stories btw - I like details :) ) I did a lot of tax research on IRS issues. I actually enjoyed reading all the rules and court cases in an effort to get to a supportable answer. I didn't know years ago, how important that skill would be.

So I don't do tax research anymore. I am consumed with multiple sclerosis research. If you don't know, the Journal of Immunology has a really great search site. Some times I find more there than I do at Google Scholar. I have spent hours upon hours reading about cytokines, Th-1&2, IFN's, macrophages and antigen presentation. I don't take the word of the neurologist as the final say and I've now learned that the neurologist is limited in scope, just as I was not all knowledgeable about tax law. :confused: The funny difference is that I was capable to telling my clients that I didn't know, but I would research it and get back to them. I've never heard of such a neurologist. Anyway, I'm trying to say I'm out to beat this MS thing and I've been in a relentless search for ways to help Kim for years.

Kim's been on Avonex, Copaxone, Novantrone and IVIG. She still takes Provigil. She's been dealing with MS for more than 15 years and used to have regular exacerbations every year or two. In 2005 she was reclassified from RRMS to SPMS. Then in the fall of 2006 she started Novantrone. While she did well on Novantrone for the first couple infusions, Her doctor stopped the therapy after the 5th infusion, saying "It's not working the way it's supposed to". :Sob: So that's when I hit the books real hard and found combined antibiotic protocol. It's not for everyone, doesn't help everyone, but for those it does help, the results are impressive. After 18 months of a carefully designed program of antibiotic use (prescribed and monitored by a neurologist), I'm finally ready to say that it is clearly making a big difference in Kim and I think others need to know about it. I don't know what will happen tomorrow. But I think the ongoing story of Kim's recovery from MS is worth the time to know about.

I know most think that taking antibiotics for MS is the dumbest thing anyone has ever suggested. :Bang-Head: I thought so too. The obsessive compulsive accountant in me had spent years reading and learning about cytokines expressed by immune system cells. I have very extensive posts explaining autoimmune theory in everyday language that I could bring here one day if anyone is interested. But, this guy didn't dismiss the infection argument, rather set out to disprove it once and for all with peer reviewed medical journal articles. Problem was, I found that there was a compelling logic to bacterial infection's association with MS. I can share that too.

So after 18 months Kim:

1) Can walk way better and faster. You might have seen the post were I discuss her 25-foot walks that are on YouTube.
2) Has no brain-fog.
3) No longer needs pee pads.
4) Has recovered sexual function. (I always struggle with how to word this)
5) Can participate in an exercise class.

I read on message boards about folks who have lost some of these parts of daily life and I read further the support many of us provide. I value what happens on message boards, I hope that my message might find just one other person whose MS would be responsive to combined antibiotic protocol. Kim got near needing to think about a catheter she did not want. We might own a Hoveround scooter, but we never got a catheter and now she doesn't hardly need pee pads. Kim is not cured, but she has maintained a consistent ongoing level of improvement in her recovery from MS. Isn't that worth thinking about?

:) Peace and Blessings, Ken

mitoxantrone
 

hello Ken, hello all,

my neuro - took me off betaseron (he could clearly see I was not happy with this medication and he was not either).

he recommended mitoxantrone (chemo. treatment) - in all honesty, I am scared and not sure I should go through with it after what I have read - but ken, your wife seems to be handling well...I TRULY DO NOT KNOW WHAT TO DO. In a few weeks, I have an appointment to discuss the treatment with the doctor who will give them to me. every three months for the maximum of 6 treatments. My neuro seems confident - he recommended it to 20 of his patients, and he is happy with the results.

but I am still not convinced and I am confused about it...please help me decide :)

Welcome Dalia, nice to meet you..:)

Isn't mitoxantrone..Navatrone? Yuck, if it were me I'd give my Doc a big NO!!!! I'm not saying that it can't help a little, but at what price.

Have you read the side effect history of "N"? I know a few people w MS, who will never be well again, because of "N"..:(

I think I would truly give Tysabri a try before considering Navatrone. JMO!!!

Daliadeeelite,
Kim handled Novantrone about as well as I suppose anyone does. But the thearapy was stopped early. I can't report on what would have happened if Kim had completed it. I can say that it was the doctor that was expecting a better outcome. The doctor didn't see what he was expecting so he stopped it. This implies to me that it does work for others and I believe that.

Given that - I will say that antibiotics have done way much more for Kim than anything else. I understand that it doesn't make sense to try something that seems off the beaten path when there are other options that others seem to have high regard for. It really should come down to an objective assessment with facts and data. Don't depend on what others say and then find yourself going with the person who seems the most credible. Get the data yourself and see. Good Luck with your discernment!
Ken

mitoxantrone
 

thanks ken for the feedback!!

i will definitely do more research before I decide - but I need to do something to at least feel a little better, less tired.

I will be going for my second MRI on the 15th of september - we will see what the results are a little later I guess...

I will definitely keep you all posted...thanks

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Sorry I missed checking this post, and failed to say hi to the newest MS members.

Believe me when I tell you that the MS forum and Stumble Inn are filled with friendly and caring people. We're so glad you found us, and I hope to see you around. :Dancing-Chilli:

New t method of communication
 

I would like to join!-but I am ignorant concerning the ins and outs of this site. I have lived with RSDandCRPS for more than twenty years. Many many diagnoses,painful treatment(emotional is the worst)both emotional & physical. I see you are very busy---but if you could find a moment to help me learn---give me tips on using website, I will be forever in your debt. Stay happy!:confused:

hello Raven

just to let you know that this is the Multiple Sclerosis forum you have posted to...the RSD/CRPS forum is here (just click on the link) http://neurotalk.psychcentral.com/forum21.html

here is a thread on the new members' forum to give you some help
http://neurotalk.psychcentral.com/thread18185.html

welcome :) and let us know if you need further assistance

Welcome to Neurotalk, Raven2. Good wishes..:hug:

Thanks Cherie for the guidance.. :hug:

New to Board
 

Hi, I'm new to this board, but not to MS. I was dx'ed in 6/82. I had a quick diagnosis, but of course no treatment except for solumedrol, ACTH, and prednisone for relapses. I'm still RR, and still mobile, so I feel lucky as hell. I've had all the meds, past tense. (I'm still waiting for that magic pill.)

Anyway, hello to all! I'm glad to have found this board and hope that I can learn as well as help in any way I can.

Welcome to NeuroTalk, Cat. So nice to have you join us. I can see, you are not a newby to MS and so glad you are still mobile and doing well.:)

I'm an oldster at this disease, myself..DX in 1976.

Please just jump in anywhere and don't forget to visit The Stumble Inn for some off MS chatter.

People forget to come to this thread, sometimes, so don't take that as a slight. Come on down..:D :hug:

Hi Raven11 glad that you found us. We are a great bunch of people
all sharing the same problem.

We are crazy at times and funny also. That helps to ease the suffering
that we share.

Just jump in at any time and someone will always be there for you.


Jappy :winky:

Same to you Cat Welcome :Wave-Hello::welcome_sign:

Like I said to Raven2 we are here for you. If we can help in anyway
we try.

After awhile it will start to feel like family to you. Hoping to see you
around.


Jappy :winky:

Newbie
 

Hi All :)

My name is Mick :D

I'm from Queensland in Australia. I'm not diagnosed at present and my only symptom is some numbness in the legs, which may be a trauma and may be disease. I'm going through the mill at the moment to figure out which :(

These kinds of forums are invaluable for confused individuals like me, I've learnt heaps here. Look forward to learning more ;)

The hardest part for me I think is that I'm only 27 and in the best physical shape of my life. I was a morbidly obese teenager (130kg/ 286lbs @ age 15). When I hit my early 20's I decided I wanted to live beyond 45 so I started a hard road to health. Now I'm 80kg/ 176lbs and sport at a competitive level, working out every other day, I quit smoking etc...... and then my body starts to fail :mad::mad:

There's a lesson for the kiddies, don't try to get healthy, its bad for your health :rolleyes:

Rant over. Great forum guys :cool:

Hi Mick and Welcome to NeuroTalk. I hope you don't have MS....but, then, on the other hand, there are worse things.;)

We have a few Peeps from DownUnder, who I'm sure will come along one of these days and welcome you.:)

Please do, just come on in and join us anywhere. We are all Family here..:grouphug:

Hey all you newbies! Welcome to the MS Forum here at NeuroTalk. You've found a great bunch of people to hang out with here.......friendly and so understanding.

I've been dx since 2005 and I'd be lost without this forum to come to every day. These people here have become my second family. I hope you all will feel the same way.

I'm truly sorry for the reason you've come here but like Sally said, there are worse things. Hope to see you all around here a lot! :)

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Hello cat and mick, and welcome to the MS forum! There is a wonderful group of people here who are willing to answer questions or listen if you need to talk.

I have learned so much here, shed some tears, and gotten some great laughs. Be sure to check out The Stumble Inn, also.

I hope to see you around. :)