Intro Hello
 

Hello Everyone

I'm new here and wanted to say hi. I am new to the place but not the illness of MS. Diagnosed in 2005 I have pretty much lost everything from my husband and house to the use of my left foot which doesn't hold my high heel shoe on it any longer. Recently given, the news of a positive JC Virus blood test result. because of no blood work ever being done, in time, for the antibody to the JC. Along with too many treatments of Tysabri ( almost 4 yrs). They tell me I can never take treatments for MS of any kind again.
Without compromising the virus and PML. Which they only tested me for once a year ago. (PML). They really can't be sure if I carry PML or not. :confused: very similar signs.

Any information regarding experiences and knowledge around blood work at this time or what I should do regarding my rights even to get some good background information on facts regarding what happens regarding this JC VIRUS and the illness itself. I haven't been feeling well for a long time. :(

I have to thank my daughter for finding this for me. I had no idea.....

:eek:

Susan

Hi Susan and welcome to our community. I wish it could be under better circumstances :hug:.

I'm sorry but I don't have any info on JC virus/PML, but there is a thread for those who have been using it. Perhaps you could copy and post your introduction in there, as some folks don't visit this one as frequently.
Hare's the link:
http://neurotalk.psychcentral.com/thread142931-43.html

Also, please do join us in the other threads and keep us posted on how you are doing. There are a lot of folks on here that have had a wide spectrum of experiences with MS and the issues that it presents...even a few fellow Canadians :winky:.

With love, Erika

Welcome to NeuroTalk, Susan, good to have you join us. So sorry as to the why,
but so glad you found us.

The JC virus sits dormant in many of us, just waiting to be awakened. In some
instances, Tysabri can wake up the sleeping tiger. Your Doc, I think, is wise
to ask you to stop your taking Tysabri. PML is either a fatal or very debilitating
disease.

I'd choose not to keep taking TY, after testing JC positive, but some do and,
so far, here, they 've been lucky. And TY does seem to be helping them lead
a better quality of live. it's your choice.

Please do join us and enjoy your stay.:hug:

Hi There...new here!
 

I'm was dx'd in July of 2013, but have been dealing with MS symptoms since my onset attack in 2010. It took almost 3 years for a dx..which was very frustrating. Most of my MRI's didn't show lesions and I didn't have the best doctors. I'm now working with a fabulous doctor and am trying to do everything I can to live a normal and healthy life.

I've been on Copaxone since November, and unfortunately, I'm not sure it's working. There has yet to be a month where I've been symptom free. I have an MRI scheduled in the next few weeks to see if there are any new active lesions. If so, we will asses the med situation then. I've tested positive for the JC virus, and my numbers are quite high, so neither my doctor or myself feel comfortable with the Tysabri option. I actually don't mind the Copaxone and the shots, and am really hoping in time it will work. But, we shall see.

Currently, I'm dealing with Optic Neuritis in my right eye and am having difficulty seeing. This is a totally new symptom for me.

My mom suffered with Primary Progressive MS from age 17-34 and eventually passed away after a being diagnosed with Breast Cancer. So, I'm truly happy to find a group of people I can talk about my MS with...it can get pretty lonely at times. My husband and support group are fantastic, but sometimes it's really nice to talk with people who are going through the same difficulties as yourself.

I look forward to getting to know everyone!!

Jess

Hi Jess and welcome to our community.

There a lot of folks here who have similar experiences to what you describe with respect to the time it took to get a diagnosis, as well as folks who have been using Copaxone.
This is definitely a great place to get and share information, support and to just vent when the need arises.

Look forward to seeing you on the board :hug::hug:.

With love, Erika

Welcome Jess, nice to meet you.:)

Please do come in and join us. We are here
to support each other through thick and thin.:hug:

Thanks, everyone! I'm very excited to be here! I don't know why I didn't join sooner.

I'm Back
 

I'm still in limbo here, finally got to see neurologist last week. She said I had about 5 white spots on my brain. Set me up for a EEG and more blood work. Implied that it could be depression, I told her if I'm depressed its due to my body acting goofy and not doing all I want it to. I could have Post Thalamic Syndrome with the symptoms (from Left Thalamic Stroke Thanksgiving 2003). I've had some level of numbness on right side of face and body since then, with periodic pain shooting up and down. This is a frustrating journey, especially when you can't explain to employer "WHY" you're stumbling and bumping into things, have brain farts, getting confused, and soooooo tired. I was just annoyed that the Dr kept warning that I could just be depressed. Depression couldn't possibly do all of this, and for most part I'm happy and enjoying people, I jusst get frustrated with my body and not knowing for sure whats going on. Anyone else felt like this? Hey "Neighbor Sally" :-)

New to forum, ms dx 6/2004
 

Hi,
I am new here and trying to find my way around. I was diagnosed with RRMS in June of 2004. I have taken Avonex and Rebiif and just began with Tecfidera a couple weeks ago. Trying to find more info from others regarding their experience with it.

Hello OmaDot and welcome to our community. Sorry that it is under such circumstances, but there are many folks here that have a vast and varied experiences with MS and treatments. Here is a thread that may provide some info and get you in contact with those who are using Tecfidera.

The "Positive" Tecfidera/BG-12/Fumaderm (modded) Thread! - NeuroTalk Support Groups

http://neurotalk.psychcentral.com/thread187662.html

With love, Erika