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I am on Tysabri.

I am experiencing new symptoms - numbness, weakness in right leg & arm, urinary numbness & weak flow - and worsening symptoms - HORRIBLE cognitive issues (much worse than ever before), spasticity, unbearable fatigue. I went to my neuro('s PA) last Friday and she got me in for an MRI that day. The MRI "looks good. No new lesions" compared to the MRI 7 months ago. She said that the next step is to do the blood test for Tysabri antibodies, but until then we'll just keep trying to manage it symptomatically. She did talk to my neuro who said this is the best plan and didn't have any other suggestions for her.

My question is this - if there are no new lesions and no enhanced lesions, how am I getting new symptoms? Why are my symptoms getting worse, it seems, by the day??

Any ideas?

valanhb
--i don't know anything about the side effects, but I hope you did stop the Tysabi--i get crazy reactions to all sorts of medicines, so won't take them.

I think I am correct that they are now finding that the lesions are not connected to symptoms--they are now thinking the iron accumulation in the grey matter is correlated to symptoms. And this iron accumulation would not show up on a regular MRI

Hope things soon get better for you...

There has never been a concrete, scientifically defined association between lesions and symptoms yet, despite the fact that all MS drugs are "lesion oriented". Neurons, oligodentrocytes and other kinds of neural cells may die without the presence of inflammation. Tysabri is potent at preventing inflammation, but can not do anything for the rest of the aspects of MS. Inflammation is a double edged knife. It has a destructive and a protective face. The whole MS hting is extremely complicated and science can not answer everything, yet.

Perhaps a very long shot, but it seems that oxidation plays a role in the whole situation. Could you try some very potent antioxidants or iron chelators? Some will strongly disagree here, but can you be checked for CCSVI?

My best wishes, my friend.

sou

My situation is opposite. I had almost no new symptoms, but 7 new lesions on my MRI last month. Five were enhanced (one with a ring and black hole).

In addition, the first time a doctor mentioned M.S. to me was when I was having my first O.N. attack. The MRI at that time came out clean. Six months later though, I had no new symptoms but four lesions (none enhanced).

Sou.. I like the idea of the Iron chelator. Is that done through chelation or is it a pill they prescribe?

its totally possible. as of right now my only diagnosis is acute transverse myelitis that happened 7 years ago but I have everysingle symptoms that any MSer ever had. I dont know why. but it is very possible. I have one lesion in the central and I have had peripheral involvment so if I were you I would get an EMG and check out your peripheral system. bottom line is that I dont think many ms symptoms come from brain lesions. the lesions are the end result of a very complex line of damage and system malfunctions.

There are drugs for iron chelation, but a good approach is EGCG (EpiGalloCatechin Gallate), a substance contained in green tea extracts. This could be a good start. Search the CCSVI forum for the term "EGCG".

sou