Timmceagle
Your Replies
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November 25, 2016 at 8:02 pm
Thanks for that Jim. My “terrorist” cell count is still low from Rituximab 18 months ago. My Neuro is checking to see if it is okay to take it on top of the low cell count, and if so I will start immediately. It has been 7 1/2 years now and though I have definitely improved with my existing treatments, it is too slow for my liking.
It might be some time to give a definitive result but I will let you know the outcome.August 29, 2015 at 7:37 pmI guess there is different ways of doing it but my NCV test did not include any skin penetration that I was aware of – just simple gel suction pads stuck in the appropriate places. The process was painless for the sensory nerve tests (zero response) and only a small jolt when testing the motor nerves (still working but slow). Not particularly uncomfortable at any stage.
August 29, 2015 at 7:27 pmOops, didn’t even look.
Molly, if you give more details in the GBS/CIDP topic you may get a better response.August 26, 2015 at 6:29 pmA lot more information required Molly. As theresatt said, age.
Plus sex, diag, (neurologist or GP), tests, medication and/or treatment. What are the main sensory nerves effected?
My own case is mainly autonomic which affects most of the functions that the occur automatically within the body. Sensory on the other hand are the nerves that sense or feel what is going on and send corrective signals to the brain. Sensory typically starts at the peripheral nerves (eg feet), giving incorrect signals to the brain causing poor balance and sometimes what is called “foot drop”.
This is simplified only because it is a extremely complex subject that very few GP’s know anything about.
Regards TimAugust 15, 2015 at 3:03 amTrueblue, I’m in Australia and I have a few contacts in different states. I’m on the Sunshine Coast and being treated by a Neurologist in Brisbane, and receive infusions in a really top clinic in Buderim. I can relate to much of what you are saying, except for the IVIG. I believe it has stopped the progression of the disease. There is no cure, but there can be remission and due to the remitting and relapsing nature of the disease I have had a couple of tastes of partial remission, and I believe I could live with that and have a useful and independent life if the partial remissions become permanent.
I agree, there is certainly no point in continuing with a neurologist who you don’t trust.
Your IVIG intolerance problem may be simply related to infusion rate, or even something as simple as hydration or pre-medication.
You do need to make contact with some group closer to home to share information re neurologists and treatments.
Kind regards
Tim.February 24, 2015 at 12:09 amDear Kelly, (and Emily)
This is fantastic news. It gives us all some extra hope, (I am in my 6th year now)
Please keep posting and keep us informed. Posts like this bring an apple to your day.
Tim.October 15, 2014 at 4:16 amSorry, a lot more information required
October 10, 2014 at 5:51 pmHear, hear. Also good to see Captain Black wiped out relatively quickly – probably the best way to discourage them.
September 26, 2014 at 5:39 pmVery much appreciated fellas. It was becoming totally out of hand. It had all bar ruined the most informative information forum that we have. God only knows we all have enough problems already without that rubbish.
September 2, 2014 at 5:52 pmSomebody more experienced than me will probably clear this up, but in my opinion IVIG and SCT are in no way related and work in totally different ways, (ie. completely independent of each other)
