Johnnymac wrote:Steroids were a god-send at two different occasions for my wife. When she was first diagnosed back in 06 a 5 day intravenous solumedrol regiment brought her out of an exacerbation and helped her balance greatly. Back then she was still walking. In march of 2010, about 3 months after stopping Tysabri infusions she had lost control of her right hand due to severe ataxia and had a constant electric shock/tingling over the back-right quarter of her skull. About 2 weeks after a 3 day solumedrol treatment the ataxia went away as did the sensations in her skull. We were told at the time she was suffering from IRIS after discontinuing the tysabri.
Exacerbations in our experience have been directly related to inflammation in her brain, which steroids really help with. Treating the inflammation helped with the symptoms but not the MS, they may be related but lets not confuse treating symptoms related to inflammation with treating MS.
Lets not try to paint every MS patient with the same broad brush. We have to remember that MS is not a one size fits all disease.
Interesting.
I did not know what IRIS stood for and I googled for an explanation. Lo and behold I hit your other postings on a different thread:
http://www.thisisms.com/forum/tysabri-a ... 10964.html
3 months after her last infusion she had about 5 days where there was a tingling/electric shock type feeling in the upper rear right portion of her skull (like when your foot/hand falls asleep). About 4 weeks ago she started having episodes of dizzyness accompanied by slurred speech which is still going on, happens between 8-12 times a day for 5-20 seconds at a time.
Well the Neuro today ordered a steroid pulse and informed us that between 4-6 months out from discontinuing Tysabri that there is a risk of IRIS or Immune Reconstitution Inflammatory Syndrome (and that it is important to get on another MS drug once the Tysabri has cleaned out of the system). This wasn't mentioned in relation to PML, but to anyone stopping Tysabri after being on it for a long period of time.
So, not only is there PML to consider with Tysabri, but also IRIS once a patient comes off Tysabri which seems inevitable at some point considering the unknowns around long-term Tysabri use.
With due respect, in my experience, none of the symptoms you mention have anything to do with 'brain inflammation' The right occipital area is very tender on palpation in almost every MS sufferer. (All the readers with MS may want to palpate and confirm this. You may have to palpate really hard at the base of the skull on the right. A few patients will have the left side more painful)
The effects on the hand and arm are a result of asymmetry of the neck vertebrae and the nerve roots emanating from the neck and traversing through very inflamed muscles. The 'magic bullet' of steroids pacifies the suboccipital muscles so one gets an abatement of symptoms and albeit a false sense of security because the underlying problem continues to get worse.
All the issues you raise are a direct result of Jaw asymmetry, not brain inflammation, as I have often seen and very treatable without the need of some magic potions. The success depends very much on how long the problem has been going on, how much damage the nerves have suffered due to palliative measures which have only suppressed the symptoms and NEVER CURED any of them.
Perhaps it should be called Symptom Suppressing Medication (SSM).
I am also intrigued by what you meant about the "Steroid Pulse" Perhaps you can enlighten me.
It is also important to note that Immune Reconstitution Inflammatory Syndrome (IRIS) is perhaps another ruse to get a second SSM going for the cabal.
It is actually the re-occurence of a symptom which was previously suppressed by the SSM and the underlying damage continued and on stopping the SSM it has reared its' ugly head. It has absolutely NOTHING whatsoever to do with 'Immune Reconstitution'.
