New to the Board but I have a question

[mommyHeidi]

Hello all,
I have had MS (well diagnosed) for almost 4 years and have been on Tysabri for almost 3 years. It has been great and has been working. The 1st year after being diagnosed I had about 7-8 flare ups and since on Tysabri I have had 2 (not bad concidering where I was headed).

I am suppose to go for a infusion in the morning and I have been noticing that I am completely numb from my calfs down. I am just getting over the flu and that is why I believe I have numb. My body is also FREAKING out, like I feel like my nerves in my head, face and neck are spasming out. I can't stop itching my body (I have had this in the past when I was having a flare).

I don't know if I should bother my Dr on a Sunday for this or if it is nothing, also if I should go ahead and go for my infusion in the morning.

Help!

Heidi

[KarenR]

Can you call your doctor first thing in the morning and explain what's going on? Is he/she at the same location as your infusion center?

Perhaps your flu sent you into a pseudo-flare? In which case your symptoms may resolve over the next day or so.

Either way, you will have to honestly answer Question #1 - Do you have any new or worsening symptoms... and a doctor will have to sign off on (or deny) your infusion.

Be well,

[REG53]

Hello Heidi,

IMHO does sound like you are in a flare. I would call my Dr. or if you had enough time to call the nurse in the morn.
If you should go in they may start you on steriods for the flare.

I hope you feel better soon.

[0485c10]

I kind of saw this too late for your infusion, but I did want to respond any way. You need to report all new and worsening symptoms to your Tysabri nurse & let the chips fall where they may. I don't know what you did...it does sound like a relapse that needs to be reported to the doc if it has lasted more than 24 hours.....

But hey I'm at 28 infusion and what was really irritating to me is what are we looking for? I will report all new and worsening symptoms but I just want an idea of what kind of symptoms are PML symtoms?

one clearer description of PML symptoms was that PML is a brain virus--so its not a optic nerve virus or a spine virus.

Brain viruses are more likely to be on one side as opposed to both sides--- as the brain is seperated into a left & right hemishere.

and an even a more detailed description of PML symptoms are published in this article, Best Practice Recommendation for the selection and management of patients with MS recieving natalizumab therapy...

http://msj.sagepub.com/content/15/4_....full.pdf+html

Page S32..it says something like this.

PML progress throughout weeks. Symptoms can include behavioral and neuropsychological changes,homonymuous hemianopsia,cortical blindness,hemiparesis, acute or subacute cognitive dysfunction,aphasia,sezures, ataxia, and tremor.


http://www.ask.com/wiki/Homonymous_hemianopsia

http://en.wikipedia.org/wiki/Homonymous_hemianopsia

http://en.wikipedia.org/wiki/Cortical_blindness

http://en.wikipedia.org/wiki/Hemiparesis

http://en.wikipedia.org/wiki/Aphasia

http://en.wikipedia.org/wiki/Ataxia




Still report all new and worsening symptoms to your tysabri nurse before the infusion...but your symptoms sound more MS than PML. Which you might find less anxiety provoking. But report it always. What did you do?

[mommyHeidi]

Thank you all for replying. I went in today and talked to my nurse, she was confident it was from being sick and went ahead and did the infusion. It honestly took everything out of me this time. I fell asleep (which I never ever do) and I was just very beat down. She said to keep a eye on it and if anything changes (which it hasn't gotten any worse) to call my doc ASAP.

Thanks to all, still after doing this for almost 4 years I still find myself questioning myself and my illness. Everyday is a new day and a new adventure.

Thanks again.